Daily Updates July 2004 to November 2006

Our third little miracle will be born on Tuesday Nov. 14 by c-section, two days away - and the emotions are overwhelming.....

I was hospitalized earlier in the week for vomiting and dehydration. I'd lost too much weight too quickly, and the docs thought it would be better to get me "pumped up" and strong again. I had my own room, peace and quiet, and it was almost like a 23 hour vacation in the hospital...

With all the quiet of the hospital, it brought me back to my time at Hopkins. All the days I spent looking out the window at the stars, just knowing there was life on the other side. In the background I had on "Sponge Bob, Square Pants", it always reminds me of one of my favorite angels from Hopkins. Joe brought me the catalogs and mail and I started reading the monthly issue of Compassionate Friends. As you may recall Compassionate Friends is a support group for people who have lost children. It hit me at that moment how surreal life seemed. Here I am in the hospital 37 weeks pregnant with a baby boy, and at the same time I am reading a newsletter for parents whose children have died, to figure out my first sons death. Once again life and death, death and life, interchangeable and can't be separated. So hard to comprehend, so abstract, I can't wrap my mind around it.

I am probably more terrified to have this child, than any other baby. Their is a blissful ignorance before you have your first child. I remember worrying about how the baby would affect my career, would we be able to go out to eat again, and would we ever sleep again. Before you have your first child, you have no idea the depth and love you will feel towards another human being. When you have that baby you know why people say they would die for their children, why they fight for their kids, and how your life is never the same because the incredible bond of love. When we had Katie we were in a cloudy haze of grief and she came quicker than expected and we didn't have time to think.

i have now preparing myself for whatever the new baby brings - almost waiting for the sky to fall in again. The first two tended to show us who was boss from the beginning. Isn't it awful to be expecting a baby and preparing yourself for the worse that could happen? It's just a harsh reality... There have been times throughout this pregnancy when I have had bad days and cried over my grief for Christopher, and when I did the baby boy inside of me would start kicking away. Almost as saying "it's ok."

This has been a year of "normalcy" and firsts with Katie. We've experienced all the normal baby stuff, rotavirus, hand-foot-mouth and ear infections. We've almost been like first time parents again, we've experienced a year of "baby normal" and a year of "baby with terminal illness." It's still hard to wrap my mind around the "normal baby stuff." I've finally stopped feeling her back for kyphosis or worrying every bruise is sign of leukemia (I've learned bruises come from normal baby crawling and walking). She's ok...

Three years ago marked one of the worst days of our life - the day our child got diagnosed with a terminal illness. It amazes me how in all the billons of seconds in our life, all it takes in one second in time to forever change our lives.

Three years ago I did not think I would have three children, live in a hospital for over 6 months and have my child die in my arms. I didn't know I would think bald sick children where the most beautiful kids in the world. I didn't think I would survive. I truly didn't know what hell was, I do now...

I didn't know my own strength and I certainly didn't know the circle of love that would envelop us. God has blessed us with the most incredible friends. They have never left our side. They taught us their really truly angels on this earth.

It has again been quite a while since I have updated. So many thoughts all the time so I am writing today and publishing some past entries I wrote but never published.

So the summer has come and gone, and I am glad to see it go. I've never been a fan of the heat, and with my big belly these days, it's not fun.

Katie continues to be the light of our lives, and even though we have battled four ear infections in 5 months, we continue to be amazed at her everyday. She has finally started crawling and helps keep me in shape by running after her. She crawls around the house saying "ro, ro, oat" (row, row, your boat) and "uh - oh" (with her mouth in a perfect zero as she says "oh").

Her first birthday came and went, and it brought back feelings and emotions I wasn't expecting. For some reason, first birthdays are such a marker, such an "entrance into childhood". Christopher ended up in the PICU in kidney failure on a morphine pump. When I look at pictures of that day, he was so, so, sick. I am so grateful to the people that tried to make his day special. I still have the balloon, plates and banners from that day.

Within the next few days, Katie will have lived longer than Christopher. I will have a child who has lived longer than 410 days. I didn't ever think I would be measuring my children by how many days they have lived, but she will have lived longer than him. About 3-4 times a month we still go to his grave. We tidy it up, leave flowers or toys, and just spend time. A few weeks ago I walked down the hill from his grave and looked up at it. There was my husband cleaning it so carefully and sitting next to him was my beautiful baby daughter. She was sticking grass in her mouth and trying to crawl across her brother's grave marker with the butterfly song on it. I never thought this is how my family would spend their Sundays, with my "living child" crawling over my "angel child's" grave. I feel I am in a constant balance between life and death, death in life, and life in death.

My birthday was last week, and I just laid at his grave and cried. My arms still physically ache to the point they feel like they are going to fall off sometimes. Not being able to hold him is also a physical pain that is so overwhelming, and that day the physical pain was unbearable. I was so sad he couldn't be here with us, but I got a beautiful sign he was ok, thank you Brandon....

For the first time in two and a half years I laugh and don't feel guilty about it. Katie makes me smile everyday and I know that's ok. I continue to work and take graduate classes, I need the structure in my day, it helps my mind from going crazy. I love to see my girlfriends and discuss the "matters of the world" such as makeup, teething, and what's going on with who. I have a wonderful marriage, I go to church, and I believe in the goodness of people and Almighty God. The best part of my day is when my little girl with her four teeth smiles at me, it just melts my heart all the time. I think I've managed to somehow keep it together and be thankful of my blessings. But deep in my heart I'm still in pain everyday. I've cried myself to sleep the past two nights, it never goes away, I just learn to incorporate it as a part of my day. I don't understand why I have to live in this pain the rest of my life (can you tell I'm having a bad day?) I miss my boy...

I've always used this forum to hopefully help others in their quest of finding out information about Hurler's Syndrome, or to help them not feel so alone in their grief. So I am going to use this to discuss something very important I would like to address.....

Many people have been congratulating us on "baby #2". While we feel blessed to have such wonderful encouragement, I would like to clarify the fact we have 3 children. Because Christopher died, does not mean he did not exist. When a woman looses her husband, we don't say she was never married and act like she never had a husband. When a child looses a parent, we don't say that child never had a parent. So why must we act like we never had a son? Now Joe and I realize, and are fully aware, of the fact this is an uncomfortable subject people don't like to discuss. However, to not acknowledge him as a member of our family is like a knife cutting through my chest, he is our son, he is real. Sometimes I have to look at his pictures to remind myself the pain is real, but he did, and does, exist.

We have three children, one who lives in heaven, and two who will live on earth. That is the way it is. We are parents to three children, we just parent each one in a different way. God has blessed us......

So for all the parents out there, whose child now lives in heaven, help us to celebrate their lives like we celebrate the lives of our living children. Each child is a miracle and a gift, not to be forgotten or overlooked.

I wonder if the angels can see the fireworks from heaven. I wonder if there's a little parade, and all the baby angels wave little flags and eat hotdogs. I constantly wonder what Christopher is doing during his day. With all the recent thunderstorms and lightening I tell Katie all the angels in heaven are having a party and the lightening is a strobe light at their party, the thunder is the angels dancing...

Katie has FINALLY started eating solid food. I sit and watch her eat Cheerios and my mouth literally hangs open. It is the most amazing thing I have ever seen. To see her trace her little finger around the Cheerio and watch her mind as she makes the connection to put the cheerio into her mouth, she is the smartest child in the world. I think she deserves a Nobel prize, to figure out such an amazing thing, it literally leaves me in wonder....

Now most people reading this will have had, or known kids to eat cheerios. But you see, Christopher never got to eat cheerios, he never got to so the "normal" things in childhood as simple as figuring out how to eat. Joe and I could see his little mind clicking away all the time, thinking in his Christopher way. He was such a smart, smart, boy.... I take nothing for granted with Katie. Every childhood marker is truly a miracle, a miracle of growing up, of living this life, it simply astounds me to see her reach these markers. It breaks my heart he never got to eat Cheerios.

There has been a significant reason why I haven't updated the website in the past two months, which will be explained. There are also past entries I have written that will be published under these entries.

In the past two months, we have been living under a stress and hell unfelt since our days at Hopkins. "Anniversaries" including birthdays and angel days are still an excruciating time. The pain and remembrance of loosing our boy is overwhelming. I have dreams of the ventilators, the machines, the look on his face, the hard bench we slept on. It's a constant challenge and anniversaries amplify those feelings.

Last month we moved (just about two miles down the road from where we were living) and left the house where all our memories of Christopher were made. I cried when I left his room, it was always my goal to get him back to that Snoopy room. The new house is great, but it started off as a huge money pit. On top of that, Katie's been sick, car broke down, work, school, life etc... However, in the midst of all this, God gave us a surprise....

God gave us a VERY UNEXPECTED, unanticipated surprise. As I write this, I am 16.5 weeks pregnant! The stress we have been feeling the past two months was not knowing if this baby had Hurler's Syndrome. As you may recall, there is a 25% chance with each pregnancy that the child will have Hurler's Syndrome. To have a child die of a terminal illness, and than have to worry about your future children dying of the same terminal illness - it almost makes the pain 100x harder if that was even possible.

Part of what made this so difficult was they are no longer doing prenatal testing for Hurler's Syndrome in the United States. People are scared of law suits and are no longer doing testing. This is so absolutely heartbreaking for so many families. The technology is there, people are just scared to use it because of the almighty dollar. So we had CVS testing done here in Virginia at 12 weeks and sent to Adelaide, Australia. Yes, that's right, Australia. In order to find out if we were going to have another child who lived or died, we had to have testing sent to Australia. Because of flight time, some of the cells died in transit and, there were not enough cells to test. The drs. had to grow the cells out in order to test them, this took another two weeks to find out the results. Thank God for our genetic counselor, and the Genetics & IVF Institute, they were instrumental in getting the testing done. It wasn't fun moving, and praying that a medical courier service would make it to Australia with our little cells - I wouldn't recommend it. We moved on a Saturday, and I went in on Monday to have the testing.

After four weeks of waiting for results - a hellish four weeks - we found out on Wednesday we are having a Healthy Baby Boy at Thanksgiving!!! Thanks be to God... We started off Christopher's "Angel Week" not knowing if we were going to have another child who died. Just four days before his anniversary we found out the news....

We had received so many signs from Christopher, I am so grateful to him. I tell him he is the best baby angel in the world. Butterflies everywhere, a fortune cookie that said "A pleasant surprise is waiting for you, and a million "Christopher songs" everyday on the radio. In Church on Sunday as I sat there crying waiting for the results the pastor said "There are Andrew's who need you." This is the name we have been thinking about using (not 100% sure yet, still deciding). My head popped up when he said that, was this our little boy? In my heart I always knew there was "another little boy" waiting for us named Andrew. It is just what I always felt and knew.

We are thankful for the friends that remembered this angel day. Your love continues to overwhelm us, we are so grateful to you. Many people forgot this year. That's ok, I understand. Life goes on for people. However, our life never goes on but so much. People do not understand you just incorporate the pain into your daily living, kind of like brushing your teeth. It never, ever, ever leaves. I miss him so much and am so thankful for Christopher's constant presence and signs.

Katie gets more beautiful each day, and I am still getting use to a "normal" baby. She now sleeps through the night (almost all the time) and has two little baby snaggle teeth. I am so grateful we can give her a "sibling on earth". They will be 15-16 months apart. Many people have said "you will have your hands full." Well, maybe, but as long as I don't have to watch another child go through chemotherapy and die, everything else is minor in comparison. There will be no more children for Joe and I after this. We are done. Having to wait for test results was a nightmare. We wanted three children, and we got three children, just not in the way we imagined.

When Joe called to tell me the results he said: "We are done with this disease. It is over with Hurler's Syndrome. It can't take anymore of our children's lives. We are through with this disease - it is out of our children's life." I can't think of a better statement to sum up everything. This disease took our oldest son, and it won't take our other children. However, what Hurler's Syndrome never took was Christopher's spirit. It didn't take his beautiful little spirit that fills my heart and gives me a million signs a day from him. No disease can ever steal a person's spirit.

As I continue down the road of the never ending graduate degree I just wrapped up Spring Classes. One of the classes required me to go in and meet with the teacher for an evaluation. The teacher asked how I liked the class and I responded how much I enjoyed it, and how it was the first time since my son died I hadn't felt guilty for doing something I enjoyed. His response was the following: "If your son was here he would tell me to just get over it and move on with your life. You will never forget him, but you just get over it and move on." I thought I was going to die. I came home and cried to midnight. It was just the careless and reckless way he referred to the death of my child, like it was the death of my dog and I could get another one. I don't like the turn "move on", I think it sounds cold, like you are just stepping over a pile of dirt in the street. You don't ever but so much "move on", you continue. I continue my life.

When you loose a child, why do people treat you like you can replace a child? The thing people don't understand is loosing a child is like having an amputation of a limb; an arm or a leg. Only people don't see the amputation, because it's an amputation of the heart. It's not visible on the outside, you don't see the bandage, amputations of the heart are invisible.

You see a child grows inside you, they are apart of you, much like your arm or leg - there is no separation - you need that part to function in life. When I was working in the Operating Room and I had a patient who was going to have a leg amputated (or had been amputated) I could never imagine saying to them, "Sorry about that leg, we've got a great plastic model that will take that place, and you've just got to get over it and move on."

When you loose an arm or leg, you must learn to walk again, eat again, write a new way and put your clothes on a different way. In the beginning of loosing Christopher I had to learn to go into a "real store" (being in a hospital for 6 months doesn't count) and not feel overwhelmed, I had to learn to put on clothes that didn't smell like puke or vomit, and I had to learn to live life again. Children are apart of you, they are no different than your eyes or ears, your arms, your legs. They just grow inside where no one can see. They never, ever go away. Patients who have lost an arm or leg talk about "phantom ghost pain" where it feels like that extremity is still there.

I have phantoms ghost pains every second of life, I had a piece of my heart amputated on June 11, 2004.

I wonder if there's an Easter Bunny in heaven? This is a question that I ponder and worry about. As a mom I want to make sure my little boy still has an Easter basket full of goodies on Easter morning. I hope there are lots of Elmo's and banana yogurt's in Christopher's basket. Easter was our last holiday with Christopher. It was in the Children's House filled with lots of love and happiness around him. He didn't feel good on Easter, he was pale and swollen, and had a scab above his lip, but I remember him smiling...

Katie had her first Easter and looked like the most beautiful little girl in the world, with an extra special dress and bonnet. We forgot to take her to see the Easter Bunny, another one of those "normal" things you are suppose to do - still getting use to normal.

For the past month I have been getting coupons from the place at the mall that does all the kids pictures, "Capture that big birthday smile, each precious year deserves a portrait, his latest milestones will last forever with this special offer!" Just another reminder, Christopher's not celebrating his birthday with us this year. After he died we got "promotional coupons and diapers" in the mail at "each stage of our child's development". The diapers, pictures, and coupons cut like a knife. We know what we have, we know what we don't have. We don't need diapers and coupons to remind us. However, as we always say, we feel blessed to be the parents of two wonderful children. We just wish he was here with us, it never goes away.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

It has been over two and a half months since I have updated, and for that I am truly sorry. Every time I have sat down to write, "life" has gotten in the way and I have been interrupted.This update will be an accumulation of thoughts that have been written down at different times, and will now be put together.

January brought our friends annual super bowl party. Amidst the laughs at this year's party brought flashbacks of Hopkins. I remembered two years ago looking out the window at Hopkins, mad we were in the Hospital, and not at the party with our friends. Christopher would have been hanging out and "watching" the game, not hooked up to machines and vomiting.

February brought the memories of Valentine's Day. My dad had driven up to Hopkins to take care of Christopher so Joe and I could go out. My dad was so proud to take care of his "little partner". I also started a new job in February, one I have been overjoyed about. I was offered a position at Fairfax Hospital as Pediatric Clinical Instructor. I'll be helping with the NICU, PICU, pediatric and pediatric oncology nursing fellowships among other teaching opportunities. It is a part time position, so I can keep working on the never ending Master's degree. I have so many ideas, and am so excited to explore opportunities to hopefully help so many other nurses help their patients. I truly feel Christopher "led" me to this position. This is my time when I can still be a "mom" to Christopher. What people don't understand is when a child dies, all the "mom" feelings and emotions just don't go away. We have all this energy and love for a child, and when they die it is still there. My time at work is my time I can be a mom to Christopher.

March brought trying to balance work, school, Katie still not sleeping through the night, and many life changing events. We sold our house, and bought another house about two miles down the road. We will be closing on the house the end of April and moving in May.

At the beginning of March I attended a Virginia Tech alumni casino night. Sitting there with friends and laughing, I looked out the windows at the stars, and thought of my little angel. I remember looking out the window at Hopkins and seeing the same stars; praying to the same stars that he would be ok. I became so sad looking at those stars, and asked Christopher for a "sign" and went back to the roulette table. I place my bet on 24 (Christopher's Birthday) and it hit, I won $35,000! Now let's remember this is fake paper money. I doubt I should be praying to Christopher and "gambling" at the same time, but it was fake money, and all proceeds go to charity. I laughed, it was so like Christopher, I could see him laughing up in heaven.

Katie was baptized a few weeks ago, in the same gown Christopher was. I was very nervous, very emotional leading up to the baptism. It was very beautiful, and the congregation was crying. Pastor Don is leaving shortly and since he baptized and buried Christopher we wanted him to baptize Katie. We got our "signs" from Christopher for Katie's special day. The night before "Something the Lord made" came on, it was filmed at Hopkins when we were there with Christopher. We saw the dome, the statue where we prayed so many times. The next day during the baptism the little hand bell choir rang "Jesus Loves Me", the last song played at Christopher's funeral.I look for my "signs" and I whether or not they are real I take them, I figure you just never know when the angels are communicating. Better to keep my mind open, than to let them pass.

This month also saw over 50,000 hits on this website. I pray it continues to help other families out there.

The months pass and they still bring tears. People think it gets "easier" with time, but you just learn to live with the pain. The pain is incorporated into our lives and we still live each day trying to figure things out. I still find myself in a daze, and I can't believe I have a child who died.

I live in a world where I feel so blessed to have so many friends, awesome parents and a beautiful daughter. Katie has a beautiful smile, she holds her toes, and babbles all the time (of course saying da-da), so many things Christopher never did. However, I feel torn, and try so hard not to be "mad" at this disease. Being mad is wasted energy, yet with the month of April and Christopher's 3rd birthday approaching I feel so angry at this disease, at all diseases that steal children of their future. Angry that Katie's big brother is in heaven, and not here on earth so the two can play and torture each other the way siblings do. I'm not angry alot, just every now and than. If I stay angry, I let the disease win....

For the first time in two years, I have felt myself have many moments of "happiness". I don't feel guilty for laughing anymore, I have a job I love, Katie is a cutie, and Tuesday will mark my 8th wedding anniversary. After eight years of marriage and having a child with a terminal illness who died, Joe and I came out surviving Life keep rolling along, a new different a new normal.

I think about my boy all the time, and will probably be updating more as his birthday approaches. To everybody out there who continues to help us keep his spirit alive, who allows us to talk, and who remembers we have "two" children, we feel so blessed. Despite the constant inner pain, the world is truly a beautiful place.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Wednesday January 18, 2006

I rang in the new year crying. I was so use to saying “Christopher died last year”, it’s not last year any more….Another year has passed, and he’s still gone. The nightmare never ends, the pain has gone from a sharp knife to a constant dull ache. WAKE ME UP PLEASE!!!! Somebody WAKE ME UP!!!!

I still feel like I live in a dull haze. Somedays are fine, most days are hazy days…. I ran a red light last month with Katie in the car, lost in my haze. It scared me to death. I was on my way to see Christopher’s grave, I pulled over and just shook. I’ve learned to incorporate the haze into my daily life. The haze and I are one. People don’t see the haze, I’ve learned to incorporate it so no one sees it. The haze screams "Wake me up!!!!!!!!!!!"

When people ask how we are, I describe it in reference to Hurricane Katrina. Hurricane "Hurler’s Syndrome" came and ripped my life apart. It stole my foundation it tossed everything apart. The rain still falls, fast and hard some days. Often when I look out on the horizon I see us standing on flat, empty ground. The wind still blows, and occasionally I can see the sun. I work towards the sun. My precious Katie is my sunlight, giving me a reason to fight. I have no foundation, everything is gone. Slowly Joe and I rebuild. One brick at a time. The bricks are heavy, they hurt to lift. Some days they are light as a feather, we have friends who make us laugh and together we build a wall. We see our precious Katie’s crooked smile and silly toes and it makes us want to build a castle to the sky. Her smile lights our dark nights and we build.

This has been a week of pain, I feel like someone is ripping my insides out again. Two years ago this week we were sticking needles in our babies body, giving him poison (chemo). I hate chemo. I think one day it will be a thing of the past, anarchical and outdated like leeches were to George Washington. Did we do the right thing? Did we make the right decisions? We’ve come to peace with most of these questions, but they still pop up. Sunday will be the anniversary of Christopher’s transplant, his second chance at life. We donated Katie’s cord blood when she was born. Hopefully it will give another family hope like we were given.

We are having a memorial blood drive at our church Saturday. I call it the “Second Annual Angel Blood Drive in Memory of children who have passed away from childhood illness.” We know too many children who have died.

Everyday I fall deeper in love with Katie. When Joe and I walk in the room and she smiles, it's brighter than the sun and makes my heart melt. That's the great thing about having kids, they teach you how to love even deeper, and even richer, when you think you can't go on. Their little smiles is what life is all about.

Our choir was awesome in church today. As I sat and listened to them sing "Gloria" the music was truly beautiful and overwhelming. I just knew their jubilant sounds were being heard in heaven, and for just a moment I knew it was something special, that Christopher and I could be sharing together. Sitting there, listening to the music together, him in heaven, me here on Earth, something to join us together again.

I have been sooo grateful to all our friends who have addressed their cards to us with "Angel Christopher" on it. It means so much. When you loose a child the thing parents want the most is acknowledge, acknowledge, acknowledge, that child. The broken heart may not be seen underneath a warm winter sweater. The tears may be covered by thick makeup, but they still live in their parents and siblings. That never changes.

A good buddy of ours became an angel on Dec. 5 and went to join Christopher, he was 8. Our hearts are so truly broken and saddened. We had gone through chemo and transplant together and had survived what I like to call "The Horror of Hopkins". I still don't know why children become sick, I don't know why they die. I just know they are loved. Their is a common thread I have found in these families. The families where the children become sick, the ones who suffer and become angels. The thread I have found that is so deep and so penetrating is - God.

With a steadfast heart turned upward, and hands constantly folded in prayers is a faith that is so pronounced it is piercing. Each family prays for healing - even though it may not always come in the way we want.... Even though we still hurt, we believe. It is this blind faith , the acknowledgement our loved one is OK, it is the only thing we have to hold onto.

I write about what I call "Christopher signs" as much for myself, than anything else. I keep them as record to remind me of all the times I feel he has come to see me, and give me a sign he is OK. You can choose to believe, or not to believe in "signs", but for me, this is all I have and they keep me going. Personally, I truly believe our loved ones try to connect with us and we must keep our eyes and hearts open, so as not to ignore what they may have to tell us.

A few weeks after Katie was born, I was in the bathroom drying my hair when I felt a tug at my pants. I sighed and was getting ready to say the two most famous words in our house "Down Belle" (As you may recall Belle is the beagle puppy I got after Christopher died). I looked down and no Belle! There had been a strong tugging at my pants and the puppy was no where in sight. I put the hairdryer down and felt astonished. I believe my little boy may have been paying me a visit...

About a month ago Joe's cousin e-mailed us to tell us that Christopher had been in her classroom! She's in Nursing school in GA and they were doing topics about genetic diseases. One of the groups gave a presentation on MPS and who should pop up on the screen but our own little Christopher, her second cousin! The group had no idea that the picture of Christopher was related to her, or there was a family member with an MPS disorder in her family Right there, in the middle of a classroom of women, and nurses no less. That's just "so Christopher."

Every year my parents church puts out beautiful wooden angels. Last year mom and dad bought one in memory of Christopher. It stays at there house throughout the year, and at Christmas all the angels are put in the front of the church and lit in honor of love ones. My dad checks on the Christopher angel at church, & his halo keeps tipping backwards. None of the other angels halos tip backwards, just Christopher's. My mom said it was because Christopher loved to have his hair blowing in the breeze, and it probably just tipped the halo backward. I like to think this. I like to think in heaven he has his beautiful blond hair back that fell out from chemotherapy. I like to dream his hair is blowing in the breeze...

Today is National Children's Memorial Day. It is recognized by Compassionate Friends and the MISS Foundation as a day to recognize and remember all the children who have become angels. It is a day to light a candle and hope all the baby angels from heaven see it, and remember they are loved. We got home from church, and I went to pull out my candles to light in the front window. We came up with our list of angels: Christopher, Cameron, Andrew, Zoe, baby Sally, Katie F., Max, Reese Cup, Tyler, Katie Bug W., baby James, and a host of others. We decided we could easily burn the house down, so I lit three tiny candles for my three boys (the first three mentioned) and one big candle to encompass all the angels. I pray they saw the candles flickering from heaven and knew how many people here on Earth love them.

Today also marks 18 months since Christopher became an angel. Such a landmark in time. 18 months. He feels so close, yet so far away. Every day that goes by seem a day longer than when I last saw him. However, I must remember that we will really truly be together one day, and every day that goes by is a day closer to when I get to see him...

When Katie was born and came home from the hospital - she slept. Her sleeping scared me to death. I would call my girlfriends in a panic, "She fell asleep again, I think she may be sick or depressed.." They assured me that babies do sleep and this was all normal. I'd get off the phone with them feeling wary, but trusting and praying they were right.

You see Christopher NEVER slept (part of the syndrome). I thought all babies stayed awake for 20 hours a day and only took one 15 minute powernap (although Katie is starting to trail close behind with the power naps).

When the hematologist told us Katie no longer needed to see him I was thrilled, yet terrified. This meant Katie would only see a pediatrician. One doctor? Could this be right, can one doctor handle a child? What about a geneticist, orthopedist, gastroentrologist, and ENT we had with Christopher? This doesn't include our visits from hematologists, neurologists, dermatologists, nephrologists and cardiologists during transplant. The thought of Katie only having to see one doctor was a radical concept it took me a while to embrace. Much like new parents we were starting over again, starting to find a new "normal" for our daughter, one so different than the "normal" for our son. I have come to the following conclusion:

What exactly is normal? What is this image of the "normal" family everyone tries so hard to live up to? I have realized each family has their own "normal". I think people often try to live up to some misconception of a "normal perfect family." Is normal 2.5 children with 1.3 pets per household?

I often worry about how I will incorporate Christopher into Katie's life and into any future children's lives we may have. How do I incorporate my dead son, their brother, into my children's lives in a "healthy" way. Going to the cemetery every Sunday after church will be her normal. Putting flowers on his grave, and giving his picture a kiss will just be what our family does. You know what? That's OK. It's OK because not every little girl will have a guardian angel watching over her. Not every family will find a feather at their feet and know it was really sent down by a true angel from heaven. I don't believe in coincidences anymore - I believe in Christopher.

For that ten minutes every week when we go to visit Christopher our pain will be seen. The rest of the week we will live with the heart ache and pain, the kind that truly rips your soul out that no one will see. I think people see us now and think we are "over it" and have "moved on" because we have learned to smile again. I often look at others now, strangers on the street, and wonder what their pain is, what their story is. Do we all truly have our own different stories? Or do some have more "luck" than others in life and never experience pain? Another one of those questions there aren't answers to. Whatever it is, I hope people learn to cherish life, love, and their health. In one second our foundation can be gone.

The past few months I have been off with Katie have been good and a blessing in disguise. It has allowed me time to think, time to figure out how to be a mom to two children, one who lives in heaven. I have had time to think about our experience at Hopkins, the horror, the pain, and yes even the occasional moments of joy and kindness that came into our lives. Our hearts have been remolded.

It is now time to move onward. It is time to be "a new different me" again; a mom, wife, nurse, forever graduate student and connoisseur of funky jewelry. I HOPE to start a new job in January (or sooner). It will be hard explaining my situation, but I am fortunate some of my former co-workers will be at my new hospital. I HAVE to start a new job, & new graduate studies; because I have a new baby. It is who I am. After all, I am a mother to two children, one who lives in heaven and one who is on Earth - mothers don't have any other choice but to move onward for their children.

Katie celebrated her first Thanksgiving with snow on the ground in the mountains of New York. After the lasagna was eaten (remember Joe's Italian), and the relatives left the reality of the day sunk in - again no Christopher. Driving to New York, I wished more than anything that both my children were in the back seat fighting and yelling at each other. I wished they were playing with each other and could be best friends as they grew up. I wished for Christopher to be healed, here on earth with me. We don't always get what we wish for, in the way we want it. He was healed, just not in the way I desired, however I must be thankful for his healing and no longer suffering.

My grandfather almost died this week. I got a phone call last Sunday, and was literally packed and in the car in less than 10 minutes for the longest four hour drive of my life. After a week in the hospital, a pacemaker, two hospitals in two different towns and a cardiac catherization, I am happy to say I just got off the phone from hearing his beautiful voice talk about the Virginia Tech game - our Thanksgiving Miracle. My parents and grandparents spent the holiday in the hospital. How do you be thankful when you spend Thanksgiving in a hospital? As our minister said today during a beautiful service (in summary) - hope and relationships are some of the most important things in life...

-having the honor to have relationships with others in life. It is through our family, our friends and those we meet in life that we realize how to live.

-my grandfather was in church when he passed out, where he was attended to immediately by an EMT and doctor. He was singing the last hymn, and the spirit surely moved him....

-being the mother to two wonderful children. I have a "different" relationship with my son now. It's not a relationship anyone can see or understand. It is a relationship built on love in my heart. It is a relationship I work on every day.

-everything. Life is truly good. Life brings pain, it also brings joys. Katie is starting to "talk" now, and it is the most beautiful thing I have ever heard.

-not understanding. I don't understand suffering, or why children suffer and are sick. I certainly don't understand why children have to die and leave their parents. I still have "flashbacks" to Hopkins. My mind shut down after Christopher died. I was giving Katie a bath and had a flashback of giving Christopher a bath in the Children's house. I just have to go on and hope and pray I will see him one day. Maybe it's better not to understand everything.

-HOPE. Hope one day no child will have a terminal illness and suffer from this horrible disease.

I was walking the dogs today and in one of the trees I found a white feather. It was a big feather, all white and fluffy. I always like to think of the feathers I find as feather's from Christopher's angel wings. That sweet boy - always giving me hope and reminding me he's close by.

Ms. Katie has been keeping us on our toes. She has reflux and is also already teething. She's now 14 weeks old and in perfect and wonderful health. Our last visit to the hematologist was wonderful and he said we don't have to come back to see him. Yeah! She was also diagnosed with a small ASD (atrial septal defect), however we will go back to the cardiologist in February and feel confident it will close. She is a beautiful girl, and we love her so much. She has a beautiful crooked smile and it warms our heart and makes us realize how lucky we are to have such wonderful children.

Joe and I will now be going down new career paths. Joe has quit his job, and has started his own company full time. He's been working part time for years building a Technology Consulting Company. We yet again reached another crossroads and had to choose to go down another new path.

As for me, I'm just moving along adjusting to all the change. After loosing Christopher, change is so difficult. Moving away and on from people or places that knew Christopher always feels like a threat to loose him anymore. Even Joe switching jobs felt like a string cut from our ties with Christopher. After much prayerful consideration I decided to change my graduate program and will be pursing a different graduate track. I'm even not going back to the same job I knew and loved, one I had cherished for four years. Due to "political reasons" I'll be working in either a different department or hospital (if any of my co-workers read this, PLEASE e-mail me, I miss you).

The thing I am still learning is nothing can take me away from Christopher. Not new jobs, new places or new things. He still continues to surround us with his presence and his love. Today at the cemetery he gave me yet another incredible sign to let me know he is well taken care of. Having the past few months off has actually been a blessing and allowed me to think and reflect on our time at Hopkins and the time following Christopher's death.

It's a good thing the picture was taken before Tech lost to Miami yesterday or else there would be tears!

I bet most people don't know what today is. It is the day Christopher was diagnosed. I walked around in a haze today thinking about how much our entire life changed in one second.

There is no way in my wildest dreams I could have imagined the turns life would have taken us. I would never have guessed the experiences, pain or way my life would have changed. When your child is diagnosed with a terminal illness and dies, the world stops.... a new world begins. Yet, somehow you go on living, and must work everyday to combine the new and old worlds, to create a "normal" world somehow.

When I graduated from Nursing School my job was on a Hematology/Oncology floor. I went home crying everyday, the patients broke my heart and I quit after six weeks. I never imagined I'd live on an oncology floor for over 6 months with my own child. I now feel more comfortable around children without hair, than children with hair, they are the most beautiful children in the world. Even my own daughter, Katie, is bald!

Our house is being filled again with love from Katie. She continues to constantly amaze us

and has brought a light back to hearts that have been filled with darkness and sorrow. I slowly feel the "old me" returning. A different "old me", one that can never be the same, but returning none the less. When Christopher died, we thought we would die the pain was so intense. Katie has given us a reason to live again.

She is getting big (at 8 weeks she is almost 10 pounds). We still have our share of doctors appointments and blood draws for her spherocytosis. The cardiologist found a very small

ASD (Atrial Septal Defect), however we are all very confident it will close with time. Her "tummy alarm clock" goes off without fail every 3-4 hours, and she loves her bottle!

Christopher has been keeping himself very busy in heaven, and I have the most amazing miracles to share!!!

Happy Birthday to Me! The end of August was my birthday, it was the BIG one! 3-0!!! On every holiday and special occasion I make the same prayer, "Christopher I miss you and love you so much. I know you are busy in heaven playing with all your friends, but if you could give me a sign, I would love it." On my birthday we were driving to dinner and I told Joe how bummed I was because I hadn't gotten my sign. We had gone to lunch, and the cemetery and I didn't see a butterfly, no sign. Joe said he had seen one, so I just sighed and figured Christopher had given me his sign through Joe, he was probably busy playing. We got to the restaurant and when the manager brought my food he said, "You're Paige, you are Christopher's mom". The manager is a wonderful angel who attends church with us. He just so happened to be working that day. He went on to tell us how he was there the day Christopher was baptized, and the day his cross was dedicated at church. He told us how he prayed for us. I think my mouth probably hung open for 10 minutes, he was my "sign" sent by Christopher! It was the best birthday present I have ever gotten, it made a perfect day. Since that encounter my heart has felt lighter and more free. I am so grateful for my amazing present.

Happy Birthday to Joe! Happy "1st Day of Church" Katie! This had been a very difficult "Hurler's week". We learned this week there are no longer any labs in the United States that do prenatal/CVS testing for Hurler's (MPS1). This is devastating news to all parents who are carriers of this gene, and I've taken it hard. I feel this disease has knocked us down again.

Today was the very first day we took Katie to church. She wore an extra special outfit (see above) and cried almost the whole time! (Thanks to Mrs. Claudina for the beautiful outfit). A package had been delivered for us at the church earlier in the week. I opened it before service (as Joe was walking the crying baby) and was awed at what it's contents held!

Out of the envelope fell two CD's, a letter, and Christopher's obituary that was placed in the Washington Post after he died, over a year ago. A jazz musician from Maryland had just happened to read the paper the day his obituary was placed. Christopher's picture touched him so much he wrote a song on his new CD and called it "Christopher's song". We have never met this person, and he probably doesn't even know this website exists. He just saw Christopher's picture in the paper and decided to write a song. The chills that I got were incredible!!! I couldn't believe it!!! I started running around showing everybody, even the pastors. What a miracle this was!!!

At the exact same time I was opening this letter, my mom was sitting in her church, two hours away, praying to Christopher to help my grieving heart, to let us know he was OK. What a wonderful gift this musician gave us. He will never know how much he impacted a grieving families heart. This Wednesday is Joe's birthday, I think this is an early birthday present from Christopher.

We went to see him today like we do every Sunday. I took a little plastic guitar and layed it at his grave, our son is so incredible, he sure does ROCK! (I actually use to play jazz for him when he was an infant). I cried with joy at the cemetary for the signs he had given us to let us know he was ok. For the first time I am beginning to feel a tiny amount of peace. I am so thankful to have a son who is still trying to take care of us.

I was on the oprah.com website tonight and saw a story idea for "unlikely heros." I wrote Oprah to tell her about my hero, Christopher. In addition to Christopher, my hero's are all the little children who fight the biggest terrorist of all, childhood disease. Everyday thousands of children battle against genetic disease, cancer and illness. These little warriors are often forgotten about, however they help teach us to live in this world with love and grace. Let's get these little heros the recognition they deserve, if you have time please write to Oprah to tell her about these wonderful soldiers. Together we can make a difference in these kids lives.

I received an e-mail from a wonderful angel in Portland, Oregon. She read about Christopher Kurls boxes, and is taking them to her local hospital. Yeah! I can't believe Christopher Kurls boxes will touch children's lives on the west coast, I am so honored.

Our house has been a little chaotic lately. We find the beagle begging for "negative attention" and stealing the pacifier. She will come around the corner with Katie's pacifier in her mouth at least twice a day. At the ripe 'ol age of 5 weeks Katie has entered into that childhood tradition of COLIC! Despite occasional fussiness she continues to fill our lives with light and joy. She has taught us the beauty of this world and how to live again. We feel so blessed and honored to be her parents, we fight over who will hold her, who will change diaper etc... I hope every parent out there that has a child realizes what a blessing they are, and how in a second life can change forever.

Many people will ask me "What I am going to do about Christopher now that Katie is here?" Well, he is still my child, that doesn't change. Last week, early on a Saturday morning about 5 am, I was giving Katie a bottle. She started "laughing" and had a big smile on her face. I asked her if Christopher was tickling her toes and she kept on laughing. After that I went outside to walk the dogs and the most beautiful butterfly flew up to me. It circled around me twice, and flew in and out of the trees. See, he's still here.

A year and a half, that is how long Joe and I have waited to bring a child home. We left for Hopkins in January 2004, and never got to bring a child back into our home until Wednesday night. We got to bring Katie home from the NICU about 9 pm on Wednesday. The house has felt so empty, so incomplete and lonely. It is finally a home again, its been a long 19 months.

Katie is such a great baby and doing wonderful. After 8 days in the NICU she came through her transfusion exchange, and got off her TPN (liquid food that goes into her veins - Christopher had the same thing), and antibiotics like a champ. We would have been home sooner but she kept "forgetting" to breath when she was taking her bottles. This was causing her oxygen saturations to decrease. We go to the pediatrician every other day for bloodwork and checkups. We are still watching her bilirubin counts and Hemoglobin, and being extra careful because of her blood condition. We'll see the hematologists in about a week to start dealing with her spherocytosis. I'm so proud of her for all the hurdles she's had to overcome in just 11 days of life. She's almost 38 weeks gestation (I had her at 36 weeks)and hardly cries and just wants to eat and sleep. She doesn't even cry when the doctors examine her or take blood. She's so little and so precious, she's just 5 pounds, 8 ounces.

Having Katie after loosing Christopher is a surreal experience. We feel we are picking up where we left off. Only this time we know more what we're doing and their is lots of pink! Joe and I were both in shock for a few days after learning Katie had a condition she would have to overcome. The spherocystosis is manageable, but will require constant monitoring. We didn't think lightening could "strike twice". But, as with everything else, it is just a matter of perspective. We just accept it, do what we have to do, and keep on going. We will not find an answer, their is not one, it is a waste of time to dwell on "why" when we are so blessed.

I've been having a difficult time, and have never had this type of pain getting over surgery. It's taking me much longer to recover, it's probably because we've been at the hospital almost every day, a few times a day. We want to thank everyone for the beautiful cards, e-mails and dinners. I apologize for not having returned everybody's calls and e-mails yet.

Christopher was alive 410 days. Christopher has been gone off this earth, and an angel in heaven for over 410 days. The days he has been an angel, now outnumber the days he was alive. When I hold Katie (which is all the time) I sometimes see a big smile come over her face. She giggles a little and falls back to sleep smiling. Babies are the closest thing on Earth to heaven and God. When I see her smile I know her big brother in heaven is telling her jokes or tickling her feet. I know he is trying to communicate to me through her, her smile is just too big and her giggle too cute. I'm blessed to have two wonderful children.

Kathryn (Katie) Paige Migliozzi came into this world on Wednesday July 20, 9:45 am weighing 5 pounds and 15 ounces at 36 weeks gestation. I had been contracting and her heart rate was decreasing, she was also not moving much. The doctors put me in the hospital on Tuesday, and I had a c-section on Wednesday morning. The doctor later said it was a good thing I had a c-section when I did, the cord was wrapped around her neck and causing the decelerations of her heart rate. Like her big brother, Katie took a trip to the NICU as soon as she was born.She had low blood sugar and was breathing rapidly. I got to hold her for 2 minutes and than she was wisked away.

As the day progressed more bloodwork was taken and she was stablized in the NICU. On Thursday the doctors found her bilirubin level to be dangerously high. Bilirubin is the breakdown from red blood cells. Her level should have been between 4-5, hers was measuring almost 20. This was causing her to be extremely jaundice. The doctors knew this indicated a serious condition and kept running more bloodwork. The neonatologists also felt we should do a full body blood exchange tranfusion as soon as possible. This involves taking out all her blood to get the dangerous bilirubin out of her system, and putting in new donated blood. The doctors put a central line in through her belly button. They would take out 10cc of her blood, than put in 10cc of fresh blood. This lasted a few hours, and the doctors"exchanged" almost 400 cc of blood.

On Friday the hematologist came to talk to Joe and I and told us she had a condition called spherocytosis. It's a blood disease where her rood blood cells are shaped like spheres instead of circles. This causes breakup of the blood cells (causing the high bilirubin levels), anemia, a low immunity and some other problems. We will have to get blood drawn probably weekly, and she will be on antibotics and folic acid everyday until she is at least 10 years old. She may also need a spleenectomy and we will have to follow her very closely. We are also having a special hearing test done called a BAER test, the high levels could have affected her hearing.

To say the least, Joe and I were stunned. Another child in the NICU, who we can't even hold, it's the worse feeling in the world. She wasn't even 30 hours old and needed a full body blood exchange transfusion, and at 48 hours we were given ANOTHER diagnosis. We didn't think lightening could strike twice, it was a lot to absorb. Spherocytosis IS not life threatening, and will not impact her learning or development. Katie will need to be monitored very closely and already has some wonderful doctors. She is a fighter and already has her central line out, is off of oxygen, and is sunbathing in the NICU under the jaundice lights. Her bilirubin levels are coming down, and we hope to get off antibotics today or Wednesday. This morning she took 2 ounces of formula!

I was discharged yesterday, and she probably won't be able to come home until Wednesday or Thursday. The hospital stay was bumpy, and I'm recovering from some cardiac problems and pain. It killed me to come home AGAIN without another baby. That was the thing I was most conc

erned about, having to leave another child behind. It seems so surreal. We're shocked to have two children, both of whom have had to fight since day 1. I can't make sense of this diagnosis, it's no where near the severity of Hurler's, however no parent ever wants to see their child hurt at all. What I do know is we love her so much and feel so honored to be parents of yet another beautiful special child. Everything she does will be so much sweeter and cherished. We are already starting to do research to figure this disease out, and I've drafted out a medicine schedule for when she will come home. We are blessed to have so many people who will be apart of her life, and love our little girl.

We have passed all of our "first" days. The last day we had to get through was June 17, the day we buried Christopher and put our baby to rest. After the first year time is still weird. I think there is an unspoken rule after a year life gets back to "normal", but it doesn't. We are still in suspended animation and the world still spins around us. Their is no time limit on grief, it's just there. I read a poem the other day about how "we never intended death and grief to be always be constantly there. It's just how life has worked out."

Christopher's little sister is arriving in a month (although I am begging the drs. to move the date up). I keep loosing weight, and she keeps gaining. I'm 33 weeks and today on sonogram she weighed 5 pounds 13 ounces, with an estimated weight of 8 pounds on delivery!!!! I bet Christopher and Katie are laughing there heads off at me. Thank goodness I'm having a C- section.

Christopher will be making his "screen debut" on the Discovery Health channel in September!!! A producer from NY found this website and contacted us about a new show called "Mystery Diagnosis" starting this fall. They are doing a segment on Hurler's Syndrome, and asked to use his picture. We are so excited! We hope it helps another family out there, or reminds doctors what to look for so these kids can get diagnose

d sooner. We are thinking about having a "red carpet" party. We'll let everyone know when we find out the exact date.

Christopher's "angel day" came and went. We want to again thank all the people in our life who blessed us with cards, e-mails, flowers, phone calls, and care packages. Each act of love truly changes our lives in ways that can not be explained.

Last year at this time, I would always think: "we were doing this last year, or we were at this point." Now everyday when I wake up I think, "last year at this time Christopher was an angel." It's like a double sided coin.

I still try to find peace with knowing he's in heaven and out of pain, but sometimes my heart wins out over my head. I had to be admitted to the hospital for a few hours this week due to dehydration, so I've had a lot of time to "think". I have written a new piece for the "Inspirations and Hope" page:

I'll close today with the poem below. I read this often and think about the words. It's taken me a long time to accept what the words say, and I have to be constantly reminded of them

One year ago today our lives changed forever. Our hearts were shattered and broken, never to be repaired. When Christopher became an angel and went to heaven he took a huge piece of our heart, and we will never be whole again until we all meet in heaven one day.

The last day of Christopher’s life plays over and over and over in our heads. Everyday it is a constant video we are always reliving. Some days I think I understand why he had to die, most days I don’t. The one thing I can always look back with pride and happiness on is we gave him a beautiful death. He was in my arms, with Joe holding his head. He was surrounded by his grandparents, aunt and uncle, pastor, and all the nurses and doctors who had worked so hard to save his life. Our cheerleader Nurse Becky was there. All his girlfriends were there. I know Christopher felt all the love he was surrounded with as he became an angel. No matter how sick he was, we always wanted him to feel the love that surrounded him and I believe he transitioned into eternal life feeling a strong sense of love. Our final gift to him.

I can’t believe it has been a year. Sometimes it feels like an hour ago, yesterday and ten years ago. As one Hurler’s mom wrote me this week, we survived.

So to our beautiful angel Christopher. We love you more than life itself. We ache every second we breath just to touch you one more time. We pray you are free from pain and suffering and God is holding you tight until we can get there.

*We will be placing a "In Memoriam" in the Washington Post tomorrow, Sat. June 11, it will be in the Death Notices section*

I miss my chair. The old red one with the holes and broken springs I use to sleep in at Hopkins. It was the "fancy" type that was a million years old and pulled out to "recline". Sometimes it was so heavy I would have to have help just to pull one cushion out, other times it would fold up on me. Every night I'd grab a sheet out of the linen closet and put our Virginia Tech blanket we take to football games on top of me. It was like sleeping every night on a wonderful piece of plywood. Our comfy bed at home seems weird. With the soft sheets and warm comforter, with the dog curled up and snuggling at our toes I can't sleep. When Christopher went on "strike" against his crib we'd let him sleep in the chair. I'd hold him like a football all night so he didn't fall or move too much. It was the most comfortable sleep I ever got.

When you live in a hospital for 6 months, a person's sense of reality become warped. Instead of road rage, or long lines at the grocery stores, you get upset if someone takes the "good bench" for you to sleep on. There was a certain bench in the waiting room of the PICU all the parents wanted. It had three cushions in it and was highly sought after. I remember making my mom sit on the "good bench" one night starting at 8 pm. There was no way I was sleeping on the table under the window again. One night I even found an old stretcher to sleep on for an hour. It was just me, my cell phone, and a noisy hallway on a broken stretcher. I remember a janitor came and brought me a sheet because it was cold, and layed it on top of me. That janitor probably doesn't know that random act of kindness helped mold my life and I will never forget him for that.

Those will always be some of the best days of my life because no matter where I was, I had Christopher

I found this picture of Christopher this weekend when I was going through his daycare folder. It makes me smile to see his laughing face. I can hear him giggling.

I prayed for this child and the Lord answered my prayer and gave him to me. Now, I give him back to the Lord. He will belong to the Lord all his life.

Today was a bad day. I must constantly remind myself to stay focused and remember he is safe and happy in heaven.

The past few weeks have been extremely difficult. However, I believe Christopher "visited me" in a dream last week, and it has given me such comfort.

One of my friends told me I need to pray for peace. Since Christopher is never off my mind for a single second, I pray every second of every day for something to help my pained heart. I have been praying the past few weeks for a "sign". Just something to let me know he is OK. Usually he will send a butterfly or his puppy will come over at that exact moment to lick my hand. Neither of these had happened for quite a while and I was very bummed. Last week all that changed.

I dreamed I was at his daycare volunteering. His teachers told me to go rock the baby. The baby was Christopher! Long story short, I got to hold him and love him. I could physically feel him in my arms, he was smiling. He's come to me before in a dream and he had the same smile. At that exact moment the cat and dog decided to get in a fight across our bed and I woke up. For the past week, I can still feel him in my arms. I truly believe Christopher visited me that night. Some people may chalk it up to crazy pregnancy dreams, but I don't believe I can discount it as a possible visitation. I think our love ones try to contact us, and we must keep our minds open so we don't miss their signs. I have to keep my mind open he was trying to tell me he was OK - it's all I have for some piece of mind.

It has taken us almost a year, but this weekend we finally put his things away in his room. It was hell. Every blanket, every little outfit, held some memory. I thought I was dying all over again. The tears flowed and flowed. There were even things from the funeral I hadn't had the courage to put up yet. I held each little piece of pajama or blanket and rubbed it to my face, and smelled it to see if it still smelled of Christopher. Some of his blankets still smelled like him and had stains from the hospital. We saved everything, nothing got thrown out. I did learn an important fact in cleaning out his room.

I had been so scared to clean his room, I had been putting it off and dreading it. I think I feared if I put

up his clothes and blankets, he wouldn't be here anymore. After his things were put away, I almost felt a sense of peace. He is still "here". He didn't go anywhere! He still lives in my heart just as strong as he did before I put up his things up! His clothes, blankets, toys, they are things. They are not Christopher. Christopher lives in my heart. Nothing, not time, not possessions, nothing can take that away. He is still my life and has that broken piece of me in heaven with him. I'm still his mama. I think about what it will be like to see him again, and live for that day.

Christopher left me one nice surprise. As I was going through his folder from daycare I found a picture of him I had never seen before. He was laying in one of his teacher's laps, grinning like a fool at all the ladies around him. That's my baby..........

Next week he will have been an angel for one year. I can't believe it, it feels like yesterday and forever.

Last year for Mother's Day Christopher gave me a wonderful gift, a clear chest x-ray! We were in the PICU, and use to get x-rays at least once a day to look at his lungs. I remember walking around, grinning like a fool. When all the nurses asked me if I had a nice Mother's Day, I was so ecstatic, a clear chest x-ray for the day! It's the best present I ever got.

I've thought for a long time about what to write today. The days leading up to today were so stressful, however the day passed with a certain peace and calmness. A good

friend told me to pray for peace, I have to remember to do that every second of every day. Once again I want to thank all the wonderful people who sent cards, e-mails and called. Thank you for remembering I'm still a mom. This was yet another "1st anniversary" milestone to surpass, and a day filled with much reflection. You reminded me I am still meant to be in this world and somehow manage to keep living.

I was at Hallmark this week looking for a card to send a friend, who also is a mom to an angel in heaven. There were none, I was furious. People forget even when you have a child who dies, you are still a mom. Their were cards, "to mom from dog", "to mom from cat", however, the cards people forget about are all the mother's out there who have angels.

The feelings and natural mother's instincts don't leave. I still worry about Christopher's safety, his happiness, and their are days when my arms physically hurt so bad I can hardly move them. They hurt because they are longing to hold a baby. I can't imagine what it will feel like to hold a baby again in 12 more weeks when Christopher's sister gets here.

I've gotten a lot of e-mails lately, with a poem that talks about "before I was a mom". Well I have my own version today, for all the mothers out there, who have children with an illness or disease that makes them special or unique.

*knew the beauty of the world, and all the special people God puts in it to take care of us. There is so much goodness and love, we have to open our eyes to see it or we will miss it.

*been so proud to be trusted with a little soul, so fragile and special, yet so strong. I am so proud to be the mother of a special child. Christopher taught me things about life, I could never learn in a million years

*knew I could change a central line dressing, clean up puke and keep on smiling and singing at the same time. I could also help draw blood from a central line in my sleep. One of his nurse's told me she remembers me getting up from my chair while sleeping, turning him upside down while she got blood and collapsing in the chair about 4 am every night (his central line didn't work well and we use to have to almost put him on his head).

*knew my child vomiting would become as routine as brushing one's teeth. Christopher would pull my shirt down and precede to vomit down my shirt and back everyday. I was like OK, whatever... just one of those things. I never got "stressed out" about nap times, dirty clothes, being tired etc... It's just clothes, they will be there the next day and the next.

*knew that my friends and parents are truly as important to me as the food I eat everyday, they sustain my soul and keep me going, without them I wither away.

*imagined I could love my husband so much. When you have a child the love for your spouse deepens, when you have a "special child" you are truly partners in saving a life.

*realized the important of bubbles. I still keep "emergency bubbles" in my cosmetic bag in my purse. Bubbles are wonderful when undergoing procedures that involve massive amounts of screaming, IV's, or long waits in doctor's offices. I think I will always keep emergency bubbles in my purse. It's just my thing.

This poem was sent to me by a beautiful mom of a beautiful little girl. I feel this describes my life. I dedicate it to anyone who is just trying to survive a certain situation in their life or who has lost a loved one. We are all survivors.......

...And so it came to be, the beautiful little boy with blond hair and blue eyes was born to the mama and daddy who didn't know if they could have a child

...the world fought with him, people prayed and prayed, fundraisers were held, meals were made, and his mama and daddy got on their knees everyday at the alter and asked God to heal their little miracle

Happy Birthday beautiful baby we love you so much!!!!!!!! We hope you are having a wonderful day in heaven. We prayed to God all week and asked him to give you a birthday party, the best party ever. We hope you have big red balloons, a cake with Elmo, and all the banana yogurt you can eat!!

This week was awful - to be honest it was hell. The pain in our hearts, another reminder he wasn't here It felt like we were loosing him all over again. Christopher's first day of life was in the NICU, his first birthday in the PICU, and his second birthday in heaven. Such a bitter sweet day. With birthdays come hopes, dreams, laughs and giggles. I hope Christopher is finally having a happy birthday in heaven. Everyone deserves a birthday free of pain.

The days leading up to his birthday were indescribable, however, sick and hurt Christopher (along with us) have been, God has surrounded us with love and Christopher's beautiful spirit. Last year on Christopher's birthday we started off the day on the research floor and ended up in the PICU. Our angel nurse Becky made sure Christopher had a proper birthday with hats, plates and a cake. Our nurses baked cookies, brought balloons and gifts, and surprised us by decorating his room. When I was unable to provide a birthday celebration for my child, God put people in our lives to provide for us. He did the same today.

We went to the cemetery this morning and had a wonderful surprise of balloons and cards on Christopher's gravesite. I got on my knees and cried. I finally felt a small ounce of peace by knowing he hadn't been forgotten. Joe and I planted flowers along his graves. Our beautiful friends have taken

care of us with this week. Once again people from near and far, all of Christopher's "Aunties and Uncles" (Becky, Matt, Brian, Becca, Lala, Angie, Laura Q, Corey, Fimbels, Masses and Thomases etc...), and even strangers that have become friends. We have also received so many phone calls, e-mails and cards, that overwhelm us. Our friends even decorated Christopher's grave for his birthday and brought us over a homemade birthday cake today, every birthday needs a cake. Joe and I put candles on the cake tonight and sang "Happy Birthday" to Christopher. I had made up a birthday song last year I sang to Christopher all the time, I've been humming it all week. We hope Christopher hears his songs.

When Joe and I were at the cemetery we both felt Christopher speaking to us. He each told us at separate times he was OK.My God, we are blessed and so lucky. We are so grateful Christopher continues to reach out to us and "talk" with us. We are so grateful for all the wonderful people that continue to touch our hearts. Your actions truly have changed our lives. Their will never be enough words to express thank you.

Pastor Don came over tonight. He told us Christopher will never be forgotten. It was music to my ears, next to the words "Happy Birthday Christopher."

It has taken me almost 10 months, but I have finally taken the baby food out of the cabinet. I moved it from the cabinet to a box, the box is still in the kitchen. I know taking baby food out of a cabinet sounds like such a little task, but it was one of those "huge events", that yet again signaled he won't be coming home. Taking the food out of the cabinet brought back a ton of memories. Almost every jar had bananas in it! After chemo Christopher's taste buds changed, and the only thing he ate was bananas. I had written about this last year, and once again I felt like "Forrest Gump". I'm sure everyone remembers the famous scene of Forest and Bubba talking about shrimp cocktail, shrimp creole, shrimp salad, etc... In my case it was bananas with strawberries, bananas with yogurt, bananas with oatmeal etc... It was a hard weekend, but this silly memory made me laugh for just a moment.

As of today there have been 40, 358 hits on this site! I can't believe it. There have been many times I have thought about stopping and not updating, but I can't do that. My hope is that Christopher's spirit lives on and touches the lives of other children out there. So I have decided to EXPAND the site. Coming in May (after I finish my final exams):

Helping children and families with genetic and chronic illness learn how to fly!

am going to build a website to help other families going through illness, and hope to provide a comprehensive resource site. It will feature everything from how to give an infant with a central line a bath, to insurance info, to how to decorate a child's hospital room, etc... Most things will be based on my experience, however, any suggestions anybody has are welcome and appreciated, and will be incorporated. Hopefully this will help other families starting this journey.

Last year at Easter we were at the Children's House. Christopher was only out of the hospital for about 3 weeks and we got to spend Easter together as a family, so thankful for all our blessings through transplant. Today Joe and I sat in church and watched Christopher's beautiful cross walked into church and placed at the front of the alter. We could not have been more proud. After church we went to the cemetery as we do every Sunday. Through the pouring rain I put his Easter Basket on his grave and told him we loved him. His basket was complete with a new Elmo, a Care Bear and a big pair of bunny sunglasses. Christopher use to have to wear his sunglasses for his PUVA treatments and the bunny sunglasses made me laugh thinking of him. All week I've been in a panic. Is there an Easter Bunny in heaven? Will the Easter Bunny come see Christopher? I hope all the little children in heaven are having the best Easter party ever, I hope the Easter Bunny came.

Our wonderful Dr. Kahler called us last night. He was an answer to a prayer. We talked about transplant again and everything that happened. He assured us we did everything right. I think Joe and I have finally come to peace with all the decisions that were made regarding transplant. We were just trying to save his life.

Exciting events this week for BOTH children. We had a fetal echocardiogram of Katie's heart done. I am now at 20 weeks, and this is the time the doctors look for heart defects. Because of my cardiac history, their is a 10% chance she could have one. So far, everything looks good! We will have another echo of her heart after she is born to double check everything. The cardiologist said everything looked "normal". I cried, I told her we hadn't heard that word very much.

Joe and I met with a wonderful person from the "Believe in Tomorrow" foundation. Believe in Tomorrow is the organization that sponsored the Children's House at Hopkins where we stayed. They are currently building apartments for long term families like we were. Transplant families can live in an apartment type setting vs. the one room we lived in. We are going to build a memorial/butterfly garden at the new house in memory of Christopher. Joe is also going to help them through our "Laptops with Love" program (see How You Can Help) to help get laptops to all the families staying there. E-mail and the internet is the only communication with loved ones people have when they are so far away from home. They also asked if we would help with some new pain programs for children. Very exiting - I love doing stuff to help the children, it makes me feel like I am doing something for Christopher. I love him so much I don't want him ever forgotten. Church was very comforting today. People came up to us and told us how they remembered Christopher. It made us feel very good, we miss him so much.

I still expect to wake up and have this nightmare end. I think any moment Christopher will come toddling through the door and the nightmare of the past year will be over. I'm still waiting for him to come home - for everything just to be a bad dream. The pain is still sharp and suffocating every day. It still takes every ounce of strength just to get up and make it through the day. I just miss him so much.

I went home this weekend and attended church with my parents. The sermon was beautiful and spoke right to my heart. It talked about how wonderful heaven is, more grand than we could ever imagine. It helped me to refocus my thinking. I have to remember as a mother I want the best for Christopher. God thought the best thing for him was to be in heaven, so he would have no more suffering or pain. If this is the best thing for Christopher, which it is, I have to accept it, and keep it centered in everything I do and think. He's not attached to machines, or tubes. His spirit was too strong for his body and now he is flying. I just miss him.....

Another month has passed and another 11th goes by. We miss him dearly. Sometimes we wonder if its all a dream and he's coming home tomorrow. But we know the truth.... He is in heaven playing with all the little girls. What a ladies man.

Thank you for all the wonderful book donations, we have over $1100 in donated books!!

The total count was about 70 books donated to the Children's House at Johns Hopkins Hospital and to the Ronald McDonald House at Fairfax Hospital. The Children's House is so excited about the books. They really needed an upgrade... Our awesome friend Gwen Meehan did all the work and we are so thankful for all her efforts. She is a very special person and has two wonderful children. Here are pictures of us and the books.

So we are 18 weeks pregnant this Monday. Mom and baby had a check up on Thursday. Paige had another sonogram and they heard her kicking and the pitter patter of her heart. She is having a lot of trouble eating because of constant nausea. She hasn't gained any weight but the doctors are not concerned. This happened with Christopher to. I think she looks great.... Just a husbands opinion.

We had a little bit of a problem at the cemetery this past week. First off several things were missing from Christopher's grave on different occasions. We talked with the Manager but found out this is a common occurrence and since they do not have 24x7 security there is not much that can be done. They installed the bench last weekend, another huge ordeal. They put the wrong bench in the wrong place, forgot to install the vases, glued the cameo on crooked, made a general mess around his grave and to top it off the epoxy did not cure and the base separated from the bench and slid about 6 inches. So we were very upset to say the least. We marched inside the funeral home and made a big fuss until we got a manager. So far they have been very responsive, the bench and base were removed within an hour, the site has been re-graded, grass seed put down and the marker moved to accommodate the proper bench location. They reseated the bench on the base and reseated the cameo also. The vases have been attached and they plan to install this week when the weather warms up and the soil settles around Christopher's plot. The whole situation was extremely upsetting to see his grave in such disarray when we try to keep it so beautiful and childlike.

After Christopher died, I prayed and prayed for him to send down a brother or sister for us to love. I told him when the time was right, to please send one down. We loved loving a child, and still have so much love to give. Being the sweet boy he is, he sent down one of his siblings.

I am 13 weeks pregnant with a little girl!!! We found out Friday she does NOT have Hurlers Syndrome or any genetic defects!

We had Choronic Villi Sampling (CVS) done about two weeks ago, and have been dying to get the results back. The CVS is done under ultrasound and the doctor inserted a needle into my stomach and removed Choronic Villi (the beginning stages of the placenta) when I was 11 weeks. From there two things were done, a DNA analysis and an enzyme test on the cells.

The DNA analysis showed there were no genetic abnormalities like Down's Syndrome, etc... The DNA analysis is how we know it is a girl. The second thing that was done was the CVS was sent to Jefferson Medical Labs in Philadelphia. At Jefferson Medical Labs they tested the cells to see if there was any enzyme activity. All a person needs of this particular enzyme to be unaffected is 0.16%poor Christopher had 0%. There is a lot of confusion on prenatal testing for Hurler's. The ONLY type that is being done is enzyme analysis, and Jefferson Medical Labs is one of the only places. Late Friday we found out that Baby Katie does have enzyme activity, meaning she does NOT have Hurler's!

The past two weeks have been a living hell waiting to find out what was going to happen. We had that old "knife in our chest" feeling like we use to have every day at Hopkins. We forgot what it felt like, where everyday our chest felt like a knife going in it and we were waiting for ANOTHER answer to a test result that could change our lives. So painful........

We went to the book store on Friday and Joe was just beaming. He told the clerk I was pregnant and she asked if this was my first. No, I told her, this is my second. I have two children. One who will live in heaven and one who will live on Earth. As a mom I will just be doing "different" things for each of my children. For Christopher I will always be honoring his memory, hoping to support other families whose children are sick, holding an annual blood drive and fighting against this awful disease. This is not the end of the story of Christopher, it is ongoing as long as I live and breath. For baby Katie I will one day be going to Brownie Scouts meeting, recitals, and visiting her at Virginia Tech. I have two children now, that will NEVER change.

As a good friend said, this is a victory against Hurler's Syndrome and ALL genetic diseases that take the lives of innocent children. These diseases rob children and families of so much, it is truly devastating. For the first time in a long time, I feel like I have kicked this disease in the face and knocked it down. I still (and will everyday for the rest of my life) mourn for Christopher. What these diseases can't rob or steal from us is the love we have for the children. Nothing can take that love away.

It figures Christopher would send us down a girl. He LOVED the ladies so much, he probably has had a blast in heaven hanging out with all the little girls and picking one out.

For now I must run..... I have to be at work in a little while, and want to run by and put Christopher's Valentine present on his grave. It's a red "crazy man" doll with purple hair that sticks up, just like he use to look when he got out of the tub.

In memory of Christopher our good friend Gwen has organized a book sale where donated books go to the Ronald McDonald House at Fairfax Hospital in Falls Church, VA. The books are published by Usborne books.

We have had 37,870 hits on this website. Thank you so much for letting me share Christopher's life.

One year ago today, at this exact time, we were just out of surgery. As many of you may recall, Christopher had 2 Day 0's because Christopher's central line kept failing. We were waiting for the precious bag of stem cells to infuse into Christopher and give him the gift of life. Like the champ he was, he handled the transplant beautifully, I have pictures of him during the transplant on the "photo gallery" page. The only thing I could think of that day was how grateful I was to the mom who decided to donate her daughter's umbilical cord (which we took the stem cells from). A complete stranger, who we never met, made an unselfish gift and gave us hope and a chance. The only thing we knew about the donor was the cells were about 3 1/2 years old (which meant the child was 3 1/2) and from a girl. It figures the cells came from a girl, Christopher loved women

much. I hope somewhere that mother is happy and blessed for the blessing and hope she gave us.

A year ago we had so much hope. Never in my wildest nightmare did I think things would turn out this way. Christopher engrafted (accepted the cells) so quickly, we just knew everything would be fine. In class last week they asked us why we were going to school to become Nurse Practioners and who our "role model" was. I said mine was my son Christopher, he taught me the beauty of life, he taught me what this world was truly all about.

I remember many nights looking out of the window from the hospital at the snow coming down. The snow was so peaceful, I could always take a deep breath when it snowed because I knew next year Christopher would be playing in the snow.It's snowing today, the "storm of the year" (which turned out to only be 3 inches). I wonder if it's snowing in heaven today. I hope it is. I hope all the baby angels are throwing snowballs and building snowmen. All the children whose bodies on Earth made them hurt, their bodies whose little arms and legs couldn't move or had a terrible disease that stole their lives. I pray they are all free, and enjoying being children, children free from pain and suffering. Children free from the tears and pain their mommies and daddies must experience everyday. I think about Christopher every second of every day. Even when people think I am "OK", I'm secretly wishing for my boy. I have to remind myself I have to experience this pain of loosing him so he won't be suffering or hurting anymore.

Thank you for all the people you put into our lives to take care of us when you left.

To all the wonderful people who have been checking in on us -thank you. I'm not sure how many people still check this site, but than I started counting and we still get a few hundred hits a month. I apologize for taking so long to update, I have not had the strength or courage to update lately- for this I am sorry. I am thankful for the kindness and love of so many people. Many people we have met have told us about friendships and people they lost in their lives due to a person's death. They suffered a double whammy - the loss of a love one, and the loss of a support system. We have lost contact with only a few people. We have been overwhelmed with love and support, kindness and grace. People near and far never forget us -even now. God has blessed us with a support network of people who remember Christopher and us, and remember the pain we continue to experience. We are so thankful for the angels who support us. The friends, co-workers, sorority sisters, Hokie friends, strangers, everyone in the world.

The holidays came and went, our first without Christopher. We attended the MPS conference the week before Christmas which was a wonderful experience. We got to meet our other friends with MPS disorders and talk to the children and parents who suffer from the diseases. We listened to the doctors talk and heard about treatments and clinical trials. We've come a long way in research - yet there is so much left to be done. Joe and I sponsored the daycare in honor of Christopher, and it was my honor to do so. The children all made us a special gift. They put their little handprints on a sheet and put their names on it. They are the most beautiful children in the world. It was the best Christmas present I have ever gotten.

It's hard to believe we were in the middle of chemotherapy one year ago. We were at Day -5, fighting central line problems and looking forward to day 0, our transplant day. We were waiting for the gift of life. I look at the past entries from that time, and it makes me so sad. Christopher was so sick and fighting so hard. I am so proud of him!

Lately the sorrow has over taken me and is like a dark cloud going everywhere. Somedays I am at peace, others I just want to scream. This grief journey is like the roller coaster I described in "Carnival by the Sea". Somedays are up, others down, most are scary. I feel I am getting use to a new life, a different me. A life that tries to incorporate Christopher everyday in every second.

I've started working on my Masters in Nursing, Nurse Practioner at George Washington University. I think about how if Christopher were here I wouldn't be doing this. I look at Belle (beagle puppy) and again think about how if Christopher were here we wouldn't have her. It's like 2 forks in the road. I'm traveling the fork I don't want to be on, looking over at the other side (which would have been a life with Christopher) at what I miss and wish I had. The fork I'm on now is scary and twisty, I don't want to be on this side studying Pharmacology and house breaking a crazy beagle. I miss being on the other side with Christopher, however I must accept the new path, as much as I don't want to. There is no where else for me to go. I need to remember how lucky I was to have him, if only for a short time. I'm proud he chose me to be his mama.

I'm sorry this update isn't as positive as many of the others. With the holidays and the anniversary of chemotherapy, my heart get overwhelmed with emotions. I'll write more at the end of the week, on the 1 year anniversary of Christopher receiving his transplant.

This verse from 1 Corinthians 13, was read at my wedding. We will be married 7 years come this April - time to start saving up for the 10 year anniversary band Joe! Just kidding - Not really :) This verse is commonly read at many weddings. When I got married almost 7 years ago I had no idea what these words meant. That's all they were - words. These 3 words Faith, Hope and Love have now become my foundation and what gets me through the day.

Faith - Faith that there really is a heaven, and a God. Faith that one day I will see Christopher again and we will be together forever and ever.

Hope - I believe Hope is the strongest of these words. Without hope their is nothing. We held out hope until literally the second Christopher died. When he died I kept his car seat in my jeep, and his highchair and swing in the kitchen where it was when he was alive. His room is still the same. All these things represent Hope. Hope, one day Christopher will send down one of his brothers or sisters for us to love -hope we can love a child again. I also have HOPE one day we will find a cure for this awful disease and all diseases that cause pain to children. After Christopher died I lost Hope for a little while but it came back. No matter what happens in life, one can never, ever loose Hope. Hope is really all we have. Everyday I cling onto hope like it is a lifeline. I can't let go or I will drown.

Love - I love Christopher. I love my husband, my family, my animals, my patients, my friends and all the people God has put into my life. I love Christopher, I love Christopher, and I love my Christopher.

One of my best friends cross-stiched me this beautiful verse for my wedding present. I now look at this everyday with fresh eyes and appreciation of the true meaning of 1 Corinthians. At Christopher's funeral Dr. Kahler talked about Faith, Hope and Love. These 3 words are the foundation for life, it just took me a while to figure it out.

I apologize for not updating sooner. I didn't know if people still checked the site, but I got an overwhelming response from people checking on us because I had not updated in a while. Thank you to all who check on us.

Christopher's been an angel for 6 months. It's hard to believe. He has been gone the amount of time we were in the hospital fighting for his life. We were at Hopkins for over 6 months, having started our journey one year ago this December. November and December have been difficult months, it brings back many memories of when we first started at Hopkins. The past year has been overwhelming, I don't even know how to express it in words. I could never have dreamed, in my wildest dreams, everything that would have happened. It was a horrific tragedy, however it was permeated with Christopher's spirit that was so strong and so beautiful. The past year has brought new people, events, and places into our lives. I think what I am trying to express is how out of all the darkness, all the tragedy, we have been truly blessed by all the things God has put into our lives.

Our first Holiday, Thanksgiving came and went. When trying to be thankful for the year I thought this has been a pretty crappy year. However, the list of things I am thankful for are overwhelming.

I am thankful for of all the mama's and daddies in all the world, Christopher chose us to be parents. He gave me the greatest gift in life, to be his mom. He gives us "signs" everyday. I have learned to "talk" with him. I tell him how much I love him, and am proud of him. I tell him how grateful I am to be his mom. I also tell him when he gets a chance if he could give me a little sign to let me know he is OK. Usually not more than a few hours will pass until I receive his sign.

I am thankful Christopher is no longer in pain. I want him here with me, but if being in heaven is where he needs to be so he is not in pain, than I must accept this - As painful as it is.

I am thankful for everything. The people who came into lives, and continue to show us we have a reason to

live and cherish his memories. Not a week goes by we don't receive a card, care package, phone call or e-mail from friends checking on us. To our angels, you have no idea how much you change our lives when you do this. Santa's secret elves came early to see us early this year. Joe and I pulled up from work last week, and the front of our house was decorated with lights, garland, a wreath and Christmas mat. I had been "anti-Christmas" this year, and the house became so special after it was decorated. That morning I had been in the rocking chair in Christopher's room, and asked him for a "sign" he was OK. Well his sign came through loud and clear! A few days later Joe went out, surprised me, and bought a mini Christmas tree and had decorated it with Christopher's ornaments. I got home from school, and their was Christopher's tree. We took a mini tree out to his grave a few weeks ago and decorated it. He has the best looking grave in the cemetery.

I am thankful for one year ago today the first Christopher fundraiser was held. People didn't ask, they just knew

and took us under their wing. I described Christopher to people a few weeks ago as a "community baby". Everybody in the community knew of him and supported us. The "sandwich mania" fundraiser was held and the money helped us with medical bills and to continue to live.

If I try really hard to hold onto everything I am thankful for, it helps get me through the day. It is hard, a constant struggle, but I must remember all the things Christopher gave us.

I have learned even though Christopher is dead, I can still "feel" him. I feel him in my heart everyday. I tell Joe I can feel him, but I can't touch him. I don't have many "why me" or angry days. I found when I had these I became disconnected from Christopher and felt further away. Most of the time my response is "I know why he had to die. I don't know why he had to be sick to begin with. I just miss him." I have learned through Christopher dying, how to have a new living relationship with him. We go to the MPS conference in Florida this week. I'm so excited. I think I'll probably fall in love with all the children, and feel even closer and deeper to Christopher.

Thank you to everyone who continues to provide support and love to us. We are so proud of our Christopher for bringing you into our lives. I often said Christopher knew he was going to become an angel and put all these people in our lives to take care of us. He did a good job. I miss my boy.

So I have come to the conclusion life is different - it's changed and will never go back and I need to accept that. Christopher died and life is different. Joe and I are different people now, the things we think, the way we look, our priorities - everything is different. And you know what, that's OK.

Things can never be the same, and I don't want them to be. When you became a parent, life changes. When you receive the diagnosis of a terminal illness, life changes, and when that child dies in your arms - you change forever. I spend my days praying and thinking of ways to help all the little children out there suffering. I dream of angels and butterflies at night. I've had to give up a sense of "control" over my child. As parents we always have some type of control over our children. Where are they? Are they OK? Are they happy, are they hungry? All the natural worries. I have had to learn to give up this natural mother's instinct and trust in the angels who are in heaven with Christopher and are taking care of him until one day I can join him again. It's so hard to let go of a natural mother's instinct! This has been one of the most difficult parts.

I have to accept our "new normal". Incorporate the pain into the daily stuff and combine the two together - together they create a new person. I'm just now getting used to the new person and learning to live again. I have to look for the signs everyday from Christopher and know he is OK. If I keep my eyes open to the signs, no matter what it is I can keep on going, whether it be from the feather laying on the ground in front of feet, or the special song on the radio. I have a new heart too, I know Christopher is with me and I can feel his presence - I must get use to the new heart.

I wasn't going to put a Christmas tree up this year. I love Christmas and don't have the energy to put a tree up this year, what for? I than decided I'm going to put a "Christopher" tree up. I ordered a few strings of Elmo lights I'm going to put on a 2 or 3 foot tree. I'll put angels and butterflies on it and it will be Christopher's tree. He still deserves to have a special tree on Earth, and he always will.

Christopher became an angel 5 months ago today. I can't believe it has been 5 months. Sometimes it feels like an hour ago, sometimes it feels like an eternity. There are certain things Joe and I have come to peace with. We know why he died and why he became an angel. We truly believe God spared him future pain. However, we don't understand why he had to have this disease - we will never understand, I think we are not meant to understand. Every day we try to comprehend it and make sense out of him being sick and dying - most of the time it doesn't work. The 11th of the month is so hard for me. The whole week before I feel sick and can hardly function. I guess it's the anticipation and reliving the awful day.

Joe and I went to the cemetery today, we still go every week. His headstone was in and looked beautiful! It was a nice surprise. The only problem is they installed it crooked on the marble, so if you tilt your head to the left it looks straight. Tomorrow I must call and get them to fix it.

The pain is still devastating. I'm currently in a period where I'm just numb to the world. It takes more energy than you can imagine to just get out of bed, go to work, and pretend to "live". The holidays are hard, and this time of year was when we were really thrown into the start of our journey. We started with Hopkins in November, when I look at my earlier updates I'm reminded of the day to day struggle. It feels weird to look at those updates and remember those days. Now we live such "normal" days, and thinking about the months in the hospital is surreal.

We are going to the MPS conference for a week next month in Florida. There will be about 600 people there from around the world, and a lot of families from London, England. During the day we will be free to explore Disney World, and at night there will be sessions on the different MPS diseases. Their will be grief sessions, research sessions etc... At night during the speakers and sessions there will be daycare provided to the children. The MPS society called us yesterday and asked us if we would donate the money for the daycare so the kids could have a huge, giant TV to watch cartoons on. We happily sent them a check today. These children have such hard lives, if we can help with a smile for just a minute, it is our honor and privilege. After we sent the check I began to think.....

One of my visions of Christopher is him in heaven with all his friends watching cartoons. He is eating Yo Baby Yogurt all day long until his little tummy pops out of his PJ's from eating so much yogurt.. (When I say friends, I mean all the little friends we have made along the way who lost their fight to MPS, cancer or other childhood diseases). In my dreams all the children are laughing at the cartoons and happy as can be. I thought of the irony of the MPS society asking us to donate money so the kids could have a TV to watch cartoons on. Another sign Christopher is OK and he is with us..... I took Belle (puppy) for a walk today and found two white feathers. Another sign...... But, we just MISS him. Every second of every day, it's a nightmare that never ends. We are sooo thankful for the signs Christopher gives us. We pray to him to let us know he is OK, and he never fails to give us a sign. We just have to keep our eyes open to see the signs, they are there.

On the home front, we are getting by. I got accepted into the Nurse Practioner program. It is a joint program between George Washington University in Washington, DC and George Mason University here in Fairfax. I'm still working and going to school so it will take me at least another 2.5-3 years to finish. When I'm done I will be able to work in a hospital, office or clinic and have prescription authority and see my own patients.

Belle (puppy) has put a kick into our day. Joe's been home for three days with some sort of "plague". I've never seen him this sick. Luckily the dogs are helping take care of him. We said this morning Christopher probably sent Belle to us as a joke. Christopher never crawled, or walked, never "got into stuff" the way babies do. Well Ms. Belle is certainly making up for that and is into everything!!!!!!!!!!!!!!! She also snores so bad I got up the other night and went and slept in the other room, didn't want to disturb the dog.

Today is Halloween. It's so hard to believe one year ago today we took Christopher trick or treating. He had just been diagnosed and we were devastated and ready to fight. We took Christopher to our best friends house and just sat on the front porch with him. She held my hand and we didn't say a word, we were all scared, but I knew we were blessed to have people stand beside us in our journey. Christopher should have been here today so we could take him trick or treating. But he's not......

My sister got married last weekend. It was a beautiful wedding for a lifetime of happiness. My mind kept playing tricks on me. I kept thinking he was there, and would have to keep reminding myself he wasn't there. I could feel his presence, as I always do, and know he's with me. I guess I kept envisioning him in his little tuxedo with hair, the way it should have been, not the picture of him in his tuxedo in his casket (he was buried in his tuxedo). My sister's wedding was such a significant event to me, and a "goal" I worked towards with Christopher. Get him well and walking by Lindsay's wedding so he could walk my mom down the aisle. But he's not here.....

Before my sister's wedding I went through his clothes to find something special to take with me to the wedding. I than noticed all his clothes have little pin holes in them. It than reminded me of how I use to buy "central line friendly" clothes so I could pull his central line outside his shirt and pin it, so it wouldn't rub up against his skin and irritate it. We still run into people who just simply look at us and don't know what to say, they just look at us. We find we still have to give "permission" for people to talk about him. It's Ok, we understand. As our minister said today, "only by remembering people do we truly honor them.

The days are still filled with so much pain, and so difficult to get through. There have been some events and "signs" from Christopher the past few weeks that give us a little bit of peace and know he's not in pain and where he should be. But we wish he never had the disease, we miss his physical presence. Today was "All Saints Day" at Church. A day to remember the loved ones who have passed. They read Christopher's name.

So what do two people do who just lost their first child to a terminal illness and now feel all alone in the world? Adopt a sick puppy!! Yes, we adopted ANOTHER homeless critter to nurse back to health. Joe and I learned not to go to PetSmart on a Saturday, because that is when all the animal adoptions are and we would come home with something. So a few weeks ago we went on a Friday night thinking we would avoid the "temptation" to adopt. However, we were tricked, there was an animal rescue league there. We fell in love with a blond beagle who is 3 months old. She is the only puppy to survive, her brothers and sisters all died from Parvovirus and mange. Nobody wanted her because she's currently immunosuppressed and I believe she has an upper respiratory infection right now. Her lungs sounded kind of junkie. When her "Foster mom" told us she was immunosuppressed and had a rough time, we just looked at her and said, "not a big deal, been there done it." At the time we decided not to get her, too much going on. We told ourselves if she was still there in a few weeks we would have to adopt her. Well we walked into PetSmart last week and their she was. Immunosuppressed, yeast infection in the ears and a respiratory infection. So we had no other choice but to adopt her.

Her foster mom did great with her and she's an awesome dog. She takes us to the door when she needs to go out, and just wants to sit in my lap and be loved the other times. We've had no accidents in the house, no bad chewing episodes, and she already follows command. The only problem is she SNORES very bad. I couldn't sleep the first night we had her she snored so bad. So she joins her brother Nick (our yellow lab who currently has his nose bent out of shape and is having a power struggle) and cats Hokie and Pokie. However Hokie and Pokie will be moving on soon. I believe Joe has developed bad allergies to them and we are looking for a good home for them.

So I think I'm going to name her Bell (Nick's name is Nicholas Snoopy, Bell is Snoopy's sister). I had originally

thought about naming her Hope. I believe she brings hope. I felt since she was the only one who survived she must be strong and have a lot of Hope. We believe Christopher brought her to us to give us hope, there are many days when we don't much hope, and have mostly sadness. If she was a healthy, regular dog we wouldn't have gotten her. We don't want to be those "crazy people" who end up in the Washington Post with a million animals. Animals are therapeutic, and maybe she will bring us some hope.

One year ago today we heard the word "positive", Christopher was diagnosed with Hurler's Syndrome.

One year ago today our lives changed forever. I will never forget the day. The pediatrician told us he wanted to see us in his office. I asked the charge Nurse at work if I could leave early, and Joe went to pick Christopher up from Daycare. The office staff ushered us into a back room and Joe held Christopher. The pediatrician came in with tears in his eyes. He said a few words, and I asked, "Is the test positive or negative?" He told us it was positive. We all gasped for air and I thought I was going to get sick and faint. My heart started racing and I had to take another blood pressure pill, and lay on the table. I thought I was going to pass out. I couldn't drive the jeep home, Joe drove us home in his car. I remember calling my mom in the car on the way home, and I don't know what I said. I think I just got out the words "positive" and that was it. The pediatrician gave us the phone number of a local geneticist who we called that night, but couldn't help us. This was too rare for even her.

We were blessed to have friends who immediately became a pillar of support. Every person we knew immediately got on the internet and started searching for ways to help us save Christopher's lives. People brought us meals because we couldn't think enough to eat. We started receiving bags of diapers, formula and baskets of baby food on our steps. Our wonderful friends just came in, and started taking care of us. This is one of the greatest blessings we ever received. Despite this horrible diagnosis, we had people surround us and love us to help us find a cure. Cards started pouring in. I made a card wreath with all the cards, too many to count but I saved them all. The card wreath has been hanging on the door in my living room for a year. We just took it down this week and replaced it with a Halloween wreath Grandma Mig made with Christopher's picture on it.

So many emotions today. I can't believe one year ago today this spiral started. I was looking over some of my past "daily updates" I have made, we were always filled with such hope and optimism. It never crossed our mind Christopher wouldn't survive. Hope was the only thing we had than, and today hope is the only thing we have now. Our hope for today is he is no longer in pain, free for his beautiful spirit to soar. Without this hope Joe and I have Christopher is at peace, their is nothing. We no longer have the honor of seeing him grow up, just the pain of what could have been if he didn't have this disease

Christopher gives us signs he is OK, in his own way. I was cleaning the bathroom on Friday and found a tiny white feather in the corner. We don't know how it got there. We receive phone calls or e-mails that help us answer questions or help us hold on when days are really bad. The pain gets worse everyday. The hole in our hearts is suffocating and we can't believe what the past year has brought us. Pain that is incomprehensible and suffocating, pain that never quits, even for a second. We can't believe our baby went through chemotherapy, transplant, surgery, and died. We can't believe Christopher died. And yet..... Christopher showed us the beauty of all the people in the world and how strangers can pull together all for a common cause, life. We're so proud of our boy.

I found a quote in the paper this week I would like to share, I've been saving it for today's entry. It talks about the passing of actor Christopher Reeve.

(Washington Post; October 12, 2004, written by: Chip Crews, page C5, last paragraph)

We celebrate life, we love life, we tell ourselves life is good. And yet very often when someone dies we force a smile and whisper, "You're free." Whatever the person's pain or rage or thwartedness it's powerless and gone, never to return. It's a comforting perspective when you look at Christopher Reeve. And it's even nicer to think that maybe somewhere he's awakened this morning, frisky as a colt, and gone off for an aimless run.

I hope somewhere Christopher is riding on Superman's back, and they are flying far above the heavens free from pain, laughing, and at peace.

** My wish would be another child would never have to be in pain and die from a horrible disease.***

Yet, another anniversary. 4 months ago today Christopher died in my arms. There is that old saying, "Time heals". I don't know who invented it, but they never lost a child. The days seem to get harder and harder. This month is full of anniversaries, another angel day, the anniversary of Christopher being diagnosed is next week, and Halloween. My sister is getting married in less than two weeks. Christopher was suppose to walk my mom down the aisle. Instead mom will hold my handkerchief walking down the aisle, instead of a little hand. She will hold the handkerchief that I carried at the funeral, it was his bonnet that was one his head when I brought him home from the hospital.

Joe and I took today off work. We went to his grave and decorated it for Halloween. The 11th of the month is our day. The other days of the month, we look "fine" to the outside world. We work, go to school, do all the stuff of the living. What people don't see is there are days where I cry for hours and collapse on the floor. We were in a store the other day and saw the new dancing Elmo that is out, and a baby was crying next to us. Christopher loved the dancing Elmo's. When I would change his central line dressing, Hokie Pokie Elmo kept him entertained and calm. I ran to the bathroom and got sick when I saw Elmo and heard the baby crying. It's events like this that still happen and will continue to happen. I know this is hard to read, but I started this website to help others. Maybe there is another family out there grieving like we are, and knowing our experience will help get them in their time of grief.

"Superman" went to be with Christopher in Heaven this weekend, actor Christopher Reeves died yesterday. When I heard this today I just knew Christopher was with Superman. Both "Christopher's" made such a difference in this world. My Christopher helped blaze a path for other children with this syndrome. Actor Christopher Reeve was an advocate for stem cell research and paralysis Both "Christ"ophers, are truly angels put on this earth. (When voting for President in November please remember stem cell research when casting your vote. It truly can provide a cure and we need more research, and more stem cell lines to be opened up . It is the only hope we have to cure diseases- Ok, I'll get off my soap box now).

I hope Superman is playing with all the children in heaven. I think he is. What I do know is Christopher's beautiful spirit is free from his body that held him back.

Joe and I have both gone into a numb state. Last year at this time we were worried Christopher might be partially deaf. He failed his newborn screening hearing many times and we were seeing hearing specialists. October 17th changed all that.

Fall is here, and in our family that has always meant College Football - Virginia Tech Hokie football. Hokies are the most loyal alumni you will ever meet. Our cats are Hokie and Pokie, and our dog wears a Virginia Tech collar. As you have seen in our picture gallery, Christopher supported his team and wore many Virginia Tech outfits. My favorite is him in his Virginia Tech jersey. We just knew Christopher would be quarterback one day.

I had always dreamed of taking him to his first game, putting him on Joe's shoulders and taking him into the beautiful stadium. I dreamed of our friends tailgating together every fall with the little ones in their "baby Hokie" gear, and Christopher growing up knowing the love of our great school.

Being the loyal Hokies that we are, Joe attended the Virginia Tech vs. West Virginia game in Blacksburg on Saturday. He went with his college friends. Our loyal friends who were the groomsmen in our wedding and the pallbearer's at our son's funeral. They have always been by our side. As Joe was watching the game, along with 62,000 other fans, a red butterfly flew past Joe in the stadium. Our friend saw it too. Tech's school colors are maroon and orange. I guess Christopher was dressed in his Hokie colors and at the game with his dad.

We want to thank everyone who attended the blood drive today!!! We had an awesome turnout, and will find out later in the week how much blood we collected. Many people came out, and we know at this point over 40 people donated and we got at least 40 units (some people had to be turned away for colds or allergies). Thank you to everyone! Christopher used so much blood during chemotherapy and the blood banks are so low. Hopefully this will help.

There is a dull ache in our heart every second. We look at pictures of him and think about how good life could have been if he hadn't had this disease. But maybe he wouldn't have been Christopher.

We went to visit Christopher at his grave today. We still go a few times a week. There were white feathers all over his grave and surrounding it. We figured he had been playing a little too hard in heaven and a few feathers fell out of his angel wings. We hope he was playing with his brothers and sisters he will one day send down to us.

We were so honored today to be able to donate a cross to church in honor of Christopher. When he passed away we started the Christopher Memorial Fund at church. A fund we can use to hopefully do wonderful things with in honor of Christopher. A few months ago we were approached about donating a cross to the church. It will be a fixture in the front of the church. It is a big brass cross, that will be walked in during special occasions (Christmas, Easter, etc...), and will be there permanently the rest of the time. There was a beautiful dedication at all three services, and Joe and I said a few words dedicating the cross, with the pastors and congregation also saying a prayer of dedication.

As I looked at the cross, the first thing I thought was I could not have been more proud of Christopher. Had he grown up and attended Harvard or Yale, gotten 10 doctoral degrees or been President, there would never be a day like today. His cross looks so beautiful, I am so proud of my son.

Joe and I forgot many things about his illness and have to be reminded of certain things. I forgot I had started "Operation Wallpaper" for Christopher at the beginning of our transplant journey and decorated his hospital room like his room at home (for our newer readers see our beginning entries that talk about Operation Wallpaper). The very first night we got to the hospital I had filled his room, the parents lounge, and the halls with decorations. I forgot about the leather chair I use to sleep in and hold him in at night until I was going through my phone yesterday. I have a cell phone you can take pictures with, and had forgotten I had taken a picture of him sleeping on the busted red chair. When he went on "strike" against the crib, Joe and I use to hold him in the chair beside us and try to sleep.

My paper towel dispenser at work, the beautiful cross at church, and the constant vision of butterflies EVERYWHERE!!!! Of course, as always, he still has our friends and family surrounding us, sticking by us, and pulling us along. We looked out in the congregation today, and there they were. Our angels Christopher sent to take care of us, still by our side, at all three services. Once again you helped us get through another day. Our friends who still call, take us out to lunch and let me cry on their shoulder at work. Our Hokie buddies who help us laugh (and have an occasional drink or five every now and than). I still go to his daycare and see his teachers, there not his teachers anymore, they are our family. And our wonderful Dr. Kahler, you still take care of us like you took care of our boy. Whether you are remembering us on certain anniversary days or currently helping me with my statistics homework, you never forget us. We love you....

I love you my angel. I'm so proud of you. There are no words that express the pain in our heart because we miss your handsome smile so much. Pastor Don's sermon today talked about children, and how one day we must see our children off to college and the great world beyond. It hit me at that moment, daddy and I had to see you off to heaven, and the wonderful eternity beyond so you could be happy, free from your pain and live your life. As much as we live in pain, it doesn't matter, you are living your life in heaven, free from a body that caused you pain. Thank you our little butterfly for paper towel dispensers, butterflies, and friends. Thank you for taking care of "your second mama", seeing her through surgery, and helping her to have a huge medical miracle.

After running around like a crazy lady at work yesterday, I finally had the chance to stop for 5 minutes and wash up a little in the bathroom. As any nurse will tell you, being able to use the bathroom or throw some water on your face is a luxury and treat in itself during the day (especially when you work a 12 hour shift with what feels like a million traumas). As I washed my hands I turned to grab for a paper towel and stopped dead in my tracks. I gasped as I looked at the paper towel dispenser. I thought for a second I was going to pass out. We got in one of those "new fangled" paper towel dispensers with the sensors. You rub your hand in front of the paper towel dispenser sensor and out pops a paper towel! The reason why the dispenser startled me so, is it use to be one of Christopher's favorite things.

He only got to live at the Children's House for about three weeks during our time in Baltimore. At the Children's House, there was the same automatic paper towel dispenser! Same color, brand and size. Christopher loved it, he thought it was the funniest thing he had ever seen. We would spend many an hour, sitting in the kitchen running back and forth and waving our hand in front of the sensor to make the paper towel come out. He would laugh and laugh, at just the simple site of the paper towel coming out. We would sit in the kitchen at the Children's House when I was giving him medication or running medications in his central line. I forgot about the "good times" we had laughing at the paper towel dispenser. There really weren't but a few "good times" during chemo. By good times I mean a few days and weeks. But, I'll take it and hold it in my heart.

I haven't seen any other dispensers like this in my hospital. Just in our locker room. As a co-worker said, maybe when I need a smile from Christopher I can just come down and go to my paper towel dispenser. I'll take a paper towel out and wipe my eyes, tears still appear in them very frequently. Maybe this is what keeps me at my job, my paper towel dispenser to remind me Christopher is close by.

We're still going through many "firsts" without Christopher. Even going into certain buildings. I went to the doctors this week and Joe went with me. The doctor's office I attend is in a big building, the same as his pediatrician's. When we were walking out of the building I had a flashback to the day we were given Christopher's diagnosis, and the three of us left the building. We were stunned and saddened, and ready to fight for his life. It was 11 months ago when we were last in that building....

-Terrorists crashed planes into buildings, and the world changed forever.....

I believe their are a lot of angels today working overtime in heaven. There is much comforting in the world that needs to be done.

Joe and I get through the day and that's about it. I have a nice balance between graduate school and work. Joe stays busy with his work. Christopher comes to visit us in our dreams, and for that we are eternally grateful. Such a sweet boy, always looking out for us. Nick (the dog) helps us to get up and get the day going. How ironic Christopher's three month angel anniversary corresponds with three months since September 11, 2001. It made me stop to realize all the pain in the world. Sometimes we feel we are the only ones, but their are other people out there suffering over the lost of a loved one. Life continues, never the same. It's changed forever and the world is seen in a different way.

Here it is the beginning of September. In Virginia school starts tomorrow, it always starts the day after Labor Day. I read an interesting article in a Compassionate Friends newsletter. It talks about how this time every year thousands of parents cheer "Yippee" I'm free from the kids again! Time for them to go back to school!" However, every year at this time, I will always remember that one day in the future I should be putting together a little Snoopy backpack and a little lunch box. Four years from now I should be holding a little hand to put on a school bus. But I won't. I would love to cheer, "Yippee, I have my Christopher home with me!!!!"

Recently a few tragedies have befallen a few different sets of friends we have. Joe and I were given so much kindness and love at Hopkins, we never knew how we would pay it back. We are just trying to "pay it forward" and help others like we were helped. It's so hard to believe, so many of us had hopes and dreams just a few months ago, and now sadness and worry have fallen on so many people we love and care about. Both sets of friends loved Christopher so much, I think that's what makes things even harder right now. Our wish was no one would ever have to feel the pain we felt.

We wake up everyday and we are still stuck in our nightmare. I think we are just now realizing we just have to incorporate the pain into our everyday lives and how we do that and live.

I started this website last October, I have never gone 2 weeks in between updates. I'm sorry, and want to thank everyone who sent cards and phone calls asking if we were OK. It was due to my computer being broken for a week (Joe was out of town and I didn't know how to fix it) and I simply didn't know what to say. We just miss Christopher. Our hearts ache and the pain is stabbing. Somehow we have learned to live with the minute by minute pain and incorporate it into our daily lives.

We are still getting past "Anniversaries", Friday was my birthday, and it wasn't a joyous occasion, just another day to get though, with the pain deeper than usual (but many thanks to my awesome friends and family who helped me get through this weekend). I couldn't help thinking about where we were last year and what we were doing.

We still get signs from Christopher and I had the most amazing sign come to me in the mail on my Birthday. It was Thursday night around midnight and I was opening the mail and received a package from London, England. I pulled out a personalized picture and a letter written from the singer Phil Collins! He personally hand wrote us a letter and signed a picture. At Christopher's funeral we played the song he wrote called "You'll be in my heart." Phil was thanking us for including his song at Christopher's funeral. We are so amazed and overwhelmed, basically speechless. Whoever our secret angel is out there who contacted him, thank you so much!!!!!!!!!!!!!! You will never know how much it touches our heart. It literally changed our life and gave us hope on an extremely difficult day.

I went on the internet and found the video for "You'll be in My Heart". There was a lady and a child running in the video. At the end you see the two hands touch with a golden light glowing. The words to this song are so beautiful, I always imagined me singing the song to Christopher. When I got the letter and listened to the song again, the words took on new meaning. Perhaps, as one of Christopher's "aunties" told me it is time to let him take care of me. I prayed all week that his "Auntie" (you know who you are) said it was OK for him to help me, and to please come to me. Angels have such a greater understanding than I ever could. I need my angel now, just for a little while everyday to help me make it through. Christopher sure did give me a sign, I continue to be so proud and honored by him.

Our friends presented us last weekend with a beautiful watercolor picture of Christopher that is now hanging on our wall. Our wonderful angel friend Christie painted it, and it is so lifelike, it takes our breath away. It's a beautiful treasure that will stay in our family forever. Sometimes we just stare at it.

It's sign's like this that get us through the day. Butterflies still appear everywhere, or "Christopher" songs on the radio and for a brief moment we hold onto our sign from Christopher and feel him near us. If you open your eyes to the signs around you, I believe you will find your loved one.

We talk to many people who have lost children. They help us so much, and remind us we can go on, life is changed forever, but somehow you can get through it. The pain is with you forever, it's just learning to incorporate it into your daily. I think the pain goes where the piece of your heart was that died when the child (or loved one) died. The pain fills up that missing piece, and you just learn to live with the pain because it is always apart of you (just like the loved one is always apart of you).

Christopher still has people taking care of us. Such a sweet angel that has put the blessing of so many people in our lives.

Grieving and living is hard. It's literally a hellish nightmare you try to get through, that never feels like it ends. But, we wake up, we fill the day, and we go to bed. We tell Christopher we love him and pray he hears.

Angel days are so hard, the pain of Christopher's death is still so fresh and raw, and on his angel day it is even deeper and more suffocating. Some days we feel we are in a nightmare we can't step out of. We just keep going around and around unable to escape.

Looking back on Christopher and his personality, we believe he knew he wouldn't live long. He always seemed so "wise", he always appeared different from the other babies. I read a story about how a baby kept looking in the distance when he sat in his Mama's arms, because he knew he wouldn't be there long and was looking for God to lead him back home. Christopher always seemed to be looking for something and smiling.

With his beautiful personality he brought people to love and support us when he returned to heaven. Christopher gave us godchildren to love, cuddle and spoil when he couldn't be here. We love our godbabies and are so honored to be apart of their lives!

We want to thank all the people who remembered this was his angel day and sent their kind words of support and love. My co-workers who take me aside and let me cry on their shoulder or give me a hug when I need it. All the other Hurler's families who give us strength and have become our rock. Our Hopkins family, the nurses, doctors and friends who we still keep in touch with. Thank you Dr. Kahler for your continual support and always knowing when we need you, we sure did need you today more than ever. Your phone call was a blessing. You always help remind us of his fighting spirit. Being in Baltimore for so long we made this whole other "family" who helped us in our daily battle for Christopher's life. When he died we were yanked from our Hopkins family and miss them. It seems so surreal.

I want to thank Ms. Denise and Mama for keeping Christopher's candle lit and shining today. Thank you to everybody in the world who has helped support us.

We went to the cemetery today to see Christopher. We probably only go about 3 times a week now. Two years ago when I found out Christopher was on the way, I never in my wildest dreams thought I would spend my days living in a hospital for six months or as a parent in a cemetery visiting my baby. Cemeteries use to always seem spooky and scary. (Probably too many scary movies). Now I see them as the most peaceful place on earth. I never thought I would ever think that.

It has been raining A LOT lately. I couldn't figure out if it was God's tears or Christopher playing in the sprinkler. Joe said he thinks Christopher has just been playing in the sprinkler's in heaven lately and that is why it has been raining. Another Hurler's child lost her battle, perhaps the kids were welcoming her home.

As we sat at his grave and told him we love him and miss him, the rain stopped and the sun came out. Walking back to the car there was a yellow butterfly with black on it. It was sitting on the grass waiting for us to walk by. It took me off guard and I yelled Joe's name. It sat there, waited for me to walk up to it, and flew away into the sunset. Thank you Christopher, we love you so much.......

We eat, we sleep, we go to work. We are lucky enough to have friends who help us get out of the house and make sure we have things to fill the day. As I talked about a few entries before, that's what things are these days (especially work) just a filler. It's nice to be with friends, I went home this weekend and saw sorority sisters, and my best friend from New Jersey was here today. There's just a certain amount of peace when I am with them. Joe and I are blessed by having people who are trying to help us through our pain. We want to thank the UNOS family, for your love and support in remembering Christopher.

The pain is some days/hours/minutes deeper than others. Certain things trigger it, especially when it's unexpected. I was at work the other day and there is a chair by the phone. I suddenly remembered sitting there last year when Joe called me to tell me we had a donor and could go to transplant. I cried tears of joy. I hear a song on the radio and will have to leave from where I am at, or will see something that reminds me of Christopher and get sick.

It's Sunday night and I look at all the things we have planned this week. Work, meetings, getting ready for graduate school, stuff the "living do". Sometimes I dread the week, once again getting through the week without Christopher there. I also dread the 11th, Wednesday. It's the day he became an angel. It will be two months on Wednesday. I can't believe it.

We miss him so much. Sometimes there is just nothing else to say. We just ache for him. One of the biggest fears for parents who have lost a child is they will be forgotten. We hope Christopher will never be forgotten, and want to always honor his memory.

Blood Donor service being provided by Inova Blood Donor services, with the new Blood Mobile!

Time slots are in 15 minute intervals (ex: 8:15, 8:30 etc....) and the whole process takes about an hour

Christopher used at least 60 units of blood products during his illness (perhaps more)

The blood drive is to honor Angel Christopher, who passed away at 13 months, and Angel Andrew Fimbel (www.andrewstoybox.com) who passed away at 5 months. Both boys passed away from rare genetic diseases after fighting for their lives. Please help us honor them by giving blood, the gift of life.

Work is harder than we thought it would be going back. Like I've said before our coworkers are awesome, but we feel work is just a "filler". Our world/heart is so different now, it's so empty and is only filled up by pain. We just try to get through the day. I work in a large hospital, and because of doing shift work I don't get to see the same people all the time. I had two people come up to me this week, and ask me how the baby was. I swallowed, took a deep breath, and said he died. I than pulled out my pictures of Christopher I carry with me, and show him off. I tell people how proud I am of him and how much I love him. I always talk about him in present tense, not past tense. He is still my son, he just lives in heaven now.

Christopher is never off our mind. We think about him all the time. I think one of the hardest things was seeing him so sick for so long. 6 months is a long time to watch someone you love suffer. When I'm in my car driving around, it hits me how long we were in the hospital for. It was a very long time, and so weird "living in a hospital" became normal for us. I watched video tape of him before he went into the hospital today. I forgot he laughed.

Coming soon: Information about the First "Angels Blood Drive" to be held in September at Centreville United Methodist Church. A blood drive in honor of angels Christopher and Andrew (Fimbel).

Sometimes our hearts hurt so much there is no way to describe the pain. A friend sent me this poem tonight. I feel it accurately describes our week, and the exact emotions of how we feel:

AND GOD SAID

I said, "God, I hurt."
And God said, "I know."

I said, "God, I cry a lot."
And God said, "That is why I gave you tears."

I said "God, I am so depressed."
And God said, "That is why I gave you Sunshine."

I said, "God, life is so hard."
And God said, "That is why I gave you loved ones."

I said, "God, my loved one died."
And God said, "So did mine."

I said, "God, it is such a loss."
And God said, "I saw mine nailed to a cross."

I said, "God, but your loved one lives."
And God said, "So does yours."

I said, "God, where are they now?"
And God said, "Mine is on My right and yours will be in the Light."

I said, "God, it hurts."
And God said, "I know."

I'm a little upset today, I may be tomorrow also. Joe and I feel so cheated. We feel cheated we will never get to see our beautiful baby grow up. What a gift to watch a child grow and become a man, a dad, and a granddad. Children are such a treasure, every little move they make is amazing.

We feel Christopher was cheated. He had to spend half his life in a hospital, in a metal crib and not in his snoopy bed in his warm home with his mama and daddy. We see children at all different stages of life, and wish we could have been given the gift of watching him grow. We try very hard not to get upset and think of what we are missing with his life. However, that's impossible to do. This disease cheated him and us.

Christopher would have been 15 months old yesterday. Every day in the month seems to have meaning. He's still on our heart every second, as he will be forever and ever. This week I was really hit with extreme "waves" some hours were fine, others I felt that stabbing feeling almost as fresh as the day he died.

People think since we are back to work we're doing fine, and the wounds are beginning to scab. This could be nothing farther than the truth. Perhaps in a few months/years we won't see work as a "filler". It just fills up about 10 hours in the day. Forces us to get up and get out of the house.

We are SO blessed to work with wonderful co-workers who understand and are considerate of Christopher's passing. I get many hugs throughout the day, often when I am trying to put on a brave face but really dying inside. The time going to and from work is my time. I listen to certain songs and cry, other times I just think. I say prayers to Christopher all day long.

I have always tried to help others in difficult situations by comparing a person's heart to a beautiful piece of crystal. Throughout a person's life a person's heart becomes banged, dented, and scratched (like a fine piece of crystal will) by the event's one goes through. When the light hits the crystal, it causes a beautiful refraction from the grooves and jagged edges. The person (crystal) shines brighter and more beautiful than ever before. I try to think of Joe's heart, my heart, and the hearts of all those out there who have lost a loved one shining. What I see is a hole in the crystal where the light gets lost. Perhaps, one day, the light will make it's way through the hole.

We go to see Christopher about 3-4 times a week now versus everyday. We don't ask why this happened, we will never find the answer. We just wish he didn't have the disease, we miss him, and love him so much.

"Perhaps there are no stars in the sky, but rather openings where our loved ones shine down to let us know they are happy."
--Eskimo legend

Sorry the updates are getting farther apart. Some days I just find it harder to write than others. We are still going through the "waves of grief". It's like being back in the hospital, just living hour by hour to see if we get through. We went into a store on Saturday, the last time we had been in there was when Christopher was alive. It just hit me and I went outside and started vomiting-just a big wave I guess. Work is good, I love holding people's hands and it's good to do that again. I miss holding Christopher's hands.

I was going to grab a hospital gown yesterday and opened the drawer where we keep all of our baby/pediatric gowns. I didn't even realize what I was doing, but I let out a small scream, than quickly covered my mouth. Christopher grew up wearing every shade and size of gown there was.

I accomplished a huge task tonight. I cooked for the first time a dinner for Joe and I since Christmas, 7 months ago. I loved to cook, and would cook often before Christopher got sick. It was nothing to have impromptu dinners and cookouts with friends on the weekends. It was a way of life. When we were living at Hopkins we ate whatever we could find or was cooked at the Children's House. Since Christopher's death we have been eating meals people have been bringing us (and are still bringing us). If somebody didn't bring food-we wouldn't eat. Food represented life, and we didn't have any interest in that. After going to the doctor yesterday and realizing how beat up my body physically is, I decided I have to "try" to do something normal. Both of us have taken a huge hit physically and must somehow pull ourselves back up.

The "four" of us would always eat together, our house rules (person number 4 is Nick the dog sitting at our feet waiting for crumbs). Christopher's bouncy chair would be on the table and we would eat with one hand, and bounce with the other. Tonight it was the three of us, no bouncy chair to bounce. Nick got Chinese Noodles crumbs.

Joe and I always remarked how Christopher looked like a "little man". We are actually getting it put on his headstone. He always seemed so inquisitive and grown up. Everything fascinated him, and he seemed to always be knowing what was going on and what he was doing. He never had that wide eyed innocent baby look. He just knew things somehow. I think with his inner beauty he brought us a world to take care of us when he was gone. I had the wonderful honor of meeting Mighty Max's Aunt Dana (Max is another Hurler's angel). I met Dana and her beautiful girls yesterday. I told my friends I was going to meet one of my transplant angels yesterday. How blessed I am to meet Max's family. I know the boy's are playing together in heaven.

I also received a very special necklace today from friends from college we hadn't seen in years. A beautiful cross with a butterfly in the middle they had made in honor of Christopher. I just feel so overwhelmed. People have given me such beautiful reminders of Christopher. My sorority sisters gave me a mother of pearl butterfly necklace, another friend had a bracelet with Christopher's initials hand made, my best friend had an angel with his birthstone put on it (which happens to be diamond- yeah), a Coach butterfly, and so on and so on. I told Christopher this morning I just needed a little sign from him today. Just a little one, I want him to spend his day playing. I than went to the post office and received my beautiful necklace. How truly blessed we are that people are helping to keep his memory alive and understand how important it is for us. I love to wear "symbolic things" it helps me to feel Christopher is with me all day long and I find myself unconsciously holding the beautiful memento I'm wearing throughout the day.

I want to thank everyone who has e-mailed me and told me they gave blood!!!! Thank you, it truly is a gift of live. I work on trauma patients who can take 10 or more units of blood during one surgery (I've heard of up to 70 units being used in a liver transplant before). Christopher used SOOO much blood when we was sick. Joe and I felt strongly about trying to get people to donate.

Thank you to all the wonderful people helping keep Christopher's memory alive! Your cards, your special treasures, your e-mails, Christopher's dedication on Friday. It leaves me speechless. I think all parents fear their children will be forgotten when they die. We have been given the reassurance by all these wonderful acts Christopher will NEVER be forgotten.

Thank you my darling Christopher for putting all these people in our lives. Friends, Strangers, everybody to take care of us. We miss you so much, our hearts are broken forever. We feel your presence surrounding us all day by everything you have put in our lives. Once again, I'm honored to be your Mama.

I've been trying to get my graduate school application together for the fall but it's turned into a mess. (Crazy boring story). I started back to work-it was weird. I love my job, I love the people I work with, the Hospital is home to me. However, on my way into work I really thought I was going to vomit. It's like I was going back to an old world, yet it was new again. I was so nervous - I don't know why. Probably just settling into a different reality. No Christopher to drop off and pick up from school. No calls from daycare or worrying how he is doing. No Christopher at all. I have to readjust to my "old, new world".

My co-workers are awesome and welcomed me with open arms. Some people were hesitant to talk to me or aproach the subject, so I would talk to them about Christopher, show them pictures, tell them how proud I of was of him. This seemed to break the ice, I think sometimes you have to give others "permission" to talk about Christopher or any loved one who is deceased. People don't know what to say, are scared to over step boundaries, or hurt feelings. This is OK, if I was in the other person's shoes I wouldn't have known what to say before now. It was good being around my work family and taking care of people again.

After much thinking and planning, I turned in the final design work for the headstone and bench for his grave. It will take a few months to come in, but it will be beautiful. We still go to see his grave all the time. We take fresh flowers, toys, and tell him we love him.

My heart just aches every second, of every second no matter where I am. I physically ache for him, my joints, my bones, everything. We are still getting meals and words of comfort from people. It helps so much because Joe and I still walk around in a crazy, dazed, world.

The week ended tonight with the best gift ever. Christopher went to Fair Oaks Hospital DayCare and they were having their 10 year anniversary picnic. It was dedicated to Christopher. The staff planted a beautiful blooming cherry tree in his honor. What a privilege it will be to watch the tree grow and bloom over the years. The staff took pictures and it was a wonderful picnic. I saw friends I hadn't seen in a long time, and it was nice to reconnect.

There are still pictures of Christopher in the infant room and they warm my heart, yet make me sad. He should be there doing baby stuff playing with his friends and teachers. Maybe he is doing this in heaven. He was so happy at Fair Oaks, they are truly a blessing in our lives.. I can't wait to see the beautiful tree bloom and know he will always be apart of such a wonderful loving place forever.

1 month ago today you became an angel. We can't believe it. We miss you so much Christopher. Our hearts are with you in heaven. Today was a difficult day since it marks the first one month anniversary of your passing.

-The way you folded your little hands together. You looked like a little old man praying, you always held your knuckles together.

You always slept with one hand holding your hair. When you were intubated I would untie your restraint so you could grab hold of a wisp of hair with your right hand.

The way you slept like a "baby burglar". You would sleep with your arms straight up in the air like you were saying "I give up, I give up."

-To see your strength. I would be so proud of you when you would try to extubate yourself.

-You lived your life with so much grace and dignity. You returned to heaven the same way. You passed away in our arms. Your funeral was beautiful and attended by a couple hundred people. Friends came we hadn't seen since college. There was a special police escort and salute at the cemetery (we are still not sure who the angel was who gave us this gift).

-You brought so many wonderful people into our lives to take care of us when you had to go back to heaven

We love you more than life itself, you are in our heart every second, our beautiful little baby butterfly.

Many people have been asking what they can do for us now that Christopher has become an angel... We ask for your help to assist other parents and children with sick children. To learn about Christopher's Caterpillars click on Snoopy or go directly to How you can Help

Dedicated to my High School French teacher who has helped me through this journey!

After Christopher passed away Joe and I were trying to decide on songs for the funeral. A very wise teacher from my past, starting sending me e-mails of encouragement to help with the difficult days ahead. She sent me the song "On Eagle's Wings." It is a hymn I grew up singing in church, and is very beautiful. We decided not to use the song for the funeral, however for the past few days the song has been stuck in my head. I have found myself humming the melody over and over. No reason why, I've just been humming along.

Joe and I were at the cemetery yesterday (Thursday) making headstone decisions, trying to decide on the perfect headstone for Christopher. We went to visit our little man (nickname) and a huge butterfly knocked me in the head. It was black and just soared right into me. "Hello Christopher" we shouted! Joe and I were cleaning off his grave and grieving our little boy like we do every second of the day. Joe gasped and said "Look!" Standing about 100 feet from Christopher's grave was an Eagle! It was beautiful and we walked over to it. The eagle stood there and let us admire it. The eagle than went up into a tree as we continued to stare at it's beauty. It flew over Christopher's grave and into the tree overlooking his plot. We were speechless.

For those of you who don't know us, we live in a huge metropolitan area, only 20 minutes outside of Washington, DC. We are the 2nd worst area in the country for traffic and congestion. To find an eagle where we live would be impossible. There are no forests, no trees, no where an eagle would come from. Perhaps another sign from my little stinky? (yet another nickname). We gave him a kiss goodbye and headed back to the car, a yellow butterfly played at feet all the way back to the car. I figured since Christopher had blond hair, that's why it was yellow. We had also tied butterfly balloons on his grave almost two weeks ago. The pink balloon is still there blowing in the breeze, and the other balloon has been gone for a while. I figured since pink represents girls, that's why it is still around.

Thank you Christopher for my signs today! I prayed Thursday morning, told him I loved him and I would open my heart up for signs he was OK. I needthat from him. I am trying not to dwell on things that would keep my heart closed, but let it open up so I can still feel Christopher and his presence around me.

Please see our new page "Carnival by the Sea" where I describe the transplant experience and what life feels life afterward. You can click on Woodstock's Ferris wheel or the index on the side.

I use this phrase for many reasons which will be explained. Yesterday Joe and I both stuck a toe back into the "sea", which is a new world to us. Joe went back to his first day of work, he hadn't been in his office for 6 weeks, and only part time before that. I went to my work to sign up for shifts, put new pictures of Christopher on my locker, and check my mailbox. It was comforting for both of us being in such a familiar place with co-workers that felt like family. However, it was confusing for both of us to only be able to look at the pictures of Christopher we have up, and know we won't end our day by going home to him.

I went to Fair Oaks Hospital Daycare Center after that to pick up his belongings and get the rest of his belongings from his crib and cubby. We just always knew he'd be coming back, so his pictures and crib were there waiting for him. It was time to pick them up. I loved his school! I love his teachers, they brought so much happiness to him and to us. I felt so lucky to have him there. I hope to always keep in touch with the school, one day they will be taking care of one of his brothers or sisters (no, I'm not pregnant). They made him happy and loved him so much, they all hold a deep place in my heart for loving my special boy.

We were going through his belongings last night and the "wave" of grief from the sea of life overwhelmed us again and I felt I was suffocating. That is the best way to describe a situation like this, a sea with low waves and high waves coming in. Going through his belongings was so sad. We miss him so much.

I loved looking at his weekly "goals and objectives". Such wonderful things as touch a pumpkin and fall leaves, listen to Italian music, practice laying on tummy and looking in a mirror. So simple, so beautiful.

There was a picture of Christopher we found that made us laugh. As I have stated many times, he loved women and was a little Prince Charming. At the ripe age of four months we found a picture of him laying in one of his teacher's arms and smiling the biggest smile we had ever seen. He was gazing into his teacher's eyes!

There were many times in the hospital I often envisioned ourselves at a carnival by a beach. I know this probably sounds crazy, but the whole time of being in the hospital was like being in a huge carnival, with up and down roller coasters, clowns (there really were clowns in the hospital) and the tilt-a-whirl (of emotions). Perhaps tomorrow I will elaborate on the "carnival journey by the sea."- a journey of a terminal illness.

We are at angel day +25, the one month anniversary of his passing is on the 11th, Sunday. I can't believe he has been gone so long. I've been reading books on people passing and their souls after they die. I am beginning to have a greater understanding of where Christopher is now. His body was the cocoon, that wouldn't allow him to live. He became a beautiful butterfly to break free and live.

Last year at this time we found out Christopher had hearing problems. We knew he had partial deafness in both ears. I remember we went to a friends house, than skipped going to any fireworks display. I was scared the high pitch sounds of the fireworks would damage his fragile hearing.

When we woke up today it was raining, and rained throughout most of the day. People often said when it rains it is God's tears. Well, I changed my mind about that day. I think when it rains it is Christopher playing in a water sprinkler out in the beautiful meadows of heaven. He and all the other children run and play in the sprinkler and laugh. He never ran or even walked. In my dreams I see him running with little Elmo swim trunks, surrounded by his friends in heaven. When I woke and saw the rain I said to Christopher, "Have fun playing in the sprinkler Christopher."

A funny thing happens when you loose a child - Life continues to go on around you, without your child in it. Joe and I have had a bad week. Everything triggers something. There are little boys everywhere, songs on the radio, or television shows that remind us of Christopher.

We look at videotape of Christopher, some of it makes us smile, some of it makes our heart ache for what was lost. However, I will never be able to say it enough, I am so proud he is my son. For such a little boy he showed he so much of the world. What a huge burden a little baby carried. He still reveals the world to us everyday, on a higher and deeper level than I could ever had imagined.

I am no longer scared of the world, what is left to fear? Joe nor I are scared of passing away one day when it is our time. Sometimes life seems so short, we blink our eyes and years have gone by. I think death, and what happens after death, is a fear many people harbor secretly inside. I know I had this fear, and I still wonder what has happened to Christopher, what he is doing in heaven. However, one day not only will be able to go to heaven, but we will have the best gift of all waiting for us at the gates-Christopher.

We are trying to "go through the motions" of life. Joe starts back to work next week, and I'll probably go back the week after that. I'm also signing up to take more graduate classes in the fall. Like I said in his eulogy "we are just shells, are hearts are with you in heaven."

We ache to hold Christopher. We wish for one second we could hold him again. Every second of our lives echo Christopher.

This poem has been given to me many times since Christopher died. I thought I should post it:

God's Loan

"I'll loan you for a little time
a child of mine," He said,
"For you to love the while he lives,
and mourn for when he's dead,

It may be six or seven years,
or twenty-six or seven,
But you will, till I call him back,
take care of him for Me?

He'll bring his charms to gladden you,
and should his stay be brief,
You'll have his lovely memories
as solace for your grief.

I cannot promise he will stay,
since all from earth return,
But there are lessons taught down there
I'll want this child to learn.

I've looked this wide world over
in my search for teachers true,
And from the throng that crowd life's lanes,
I have selected you.

Now, will you give him all your love,
nor think the labor vain,
Nor hate Me when I come to call
to take him back again?

I fancied that I heard you say,"
Dear Lord, Thy will be done,
For all the joy Thy child shall bring,
the risk of grief we'll run.

We'll shelter him with tenderness,
we'll love him while we may,
And for the happiness we've known,
forever grateful stay.

But should the angels call for him
much sooner than we planned,
We'll brave the bitter grief that comes
and try to understand.

~Author Unknown~

We miss Christopher. Sometimes there is nothing else to say. We just miss him.

We have talked with or e-mailed a lot of other families who have lost children in the past few weeks. Your strength and outlook on life helps us through this very difficult time. Thank you - you strengthen us and you are helping to reshape our lives. After meeting with some special friends tonight, we went out and rented the movie "Pay It Forward". We hope we can "pay it forward" one day and help out others as you have helped us!

We still visit his grave everyday. We put up butterfly balloons yesterday. We also decorated the flower stands with red, white and blue flowers with 2 little flags for 4th of July.

I bought shelves and picture frames and made a Christopher wall in my living room. We put all our favorite pictures on the wall. I also created a shadow box that sits on the shelf. In it I placed his pacifier, a butterfly from Mary Kate, a cross from Becca, a tiny pair of wooden shoes given to us to represent his "trip to Holland" and the butterfly boxes from the funeral. Next to the box I sat angels people have given me since he died, and a beautiful crystal butterfly Brian and Jameela gave us. I love looking at the wall, it gives me a certain peace. I see Christopher's beautiful picture along with special treasures given to him by some of the people we care about most.

Our friends are still being incredible. I have received a beautiful necklace my best friend and her mom had made for me with a beautiful diamond (Christopher's birthstone), and another close friend had a bracelet made for me with his initials. I will wear these everyday and feel Christopher is right there with me, along with the beautiful people who designed the jewelry and gave it to me with love. We still have people bringing us meals, calling us, taking us to dinner and teaching us how to live again. In many ways we must relearn life, with Christopher living in our heart, and not in our physical presence. We are blessed to have such a wonderful support system.

We have received e-mails and cards from all over the world - thank you. You have no idea how much it has meant. We are overwhelmed at the circle of love that has been shown to us.

We sleep, we take Nick (dog) for walks and we go through the motions of life. We don't have much of an appetite, so we eat every now and than. I miss him and cry when I look at his precious pictures. We received a letter from the Virginia Tech Alumni Association, expressing their condolences on behalf of the university. This was so amazing and blew us away. We don't know how they found out, but this will always be a cherished letter for us. Our entire family are Virginia Tech Alumni, so naturally we thought Christopher would go there and play football. We could tell he already had a "linebacker build", and he looked so cute in his football jersey! See "Photo Gallery" for a picture of him in his jersey. He had stuffed Hokie Birds (the mascot) as some of his first toys. His "Auntie" Angie and "Uncle" Bubba had given him his favorite book, "Hello Hokie Bird". A children's story about the Hokie Bird walking the grounds of Virginia Tech to get to the big game.

We visit Christopher's grave every day. I always clean it up and make it look nice and pretty, I always bring fresh flowers. Sometimes "Christopher the butterfly" will come and play. He came today, a beautiful black butterfly with yellow and red. He sat on the grass and let me come up to him. I told him I loved him and missed him. I told him I was so sorry he had this disease. We "talked" for a while, and than the butterfly flew to Joe and was gone. Perhaps it was time for him to play.....

We took Nick today to visit Christopher and after he was done sniffing and rolling in the grass he layed by Joe and I. We always take a quilt and throw it down next to the grave. The three of us were laying on the quilt, and for a second it felt like Christopher was in my arms again and we were all laying there looking up at the beautiful sky.

Hokie the cat has turned yellow from eating the flowers. Her right paw and her front are yellow, she is enjoying the house that has become a florist very much. However, time is passing and the flowers are starting to die. Despite this, the grass over Christopher's grave is starting to grow green and tall. It strikes me as unusual and quick how after a week grass is beginning to grow. The flowers in the house are dying, and the grass is growing. And life begins anew..... I hope Christopher has begun a new life.

Our friends have been taking care of us by providing us meals, company, phone calls, and forcing us to leave our house and join the outside world again. For this we are so grateful. Christopher would want it this way, he loved life. Every minute we still grieve Christopher, he is our heartbeat. We miss him so much. I have more books on children and dying and have been trying to read them. They give me some sense he is OK. I have such a long journey to find peace that he really truly is OK.

Neither one of us are working right now. We feel caught in a surreal dream and keep trying to pull ourselves out of this dream and back into what world we are suppose to be in. We can't concentrate and we are still wrapping things up from the funeral. I guess we are figuring out how to live again. We were so use to being at the hospital for so long, and going to doctors and hospitals, and having Christopher, it's weird getting use to the quiet.

This poem was sent to me today and posted in my guestbook, I wanted to make sure everyone read it. We did a butterfly release at Christopher's graveside burial.

Butterfly Memorial- Release of Butterflies .

“A butterfly lights beside us like a sunbeam. And for a brief moment its
glory and beauty belongs to the world. But then it flies once again, and
though we wish it could have stayed, we feel so lucky to have seen it.”

As you release this butterfly in honor of me,
Know that I’m with you and will always be.
Hold a hand, say a prayer,
Close your eyes and see me there.
Although you may feel a bit torn apart,
Please know that I’ll forever be in your heart.
Now fly away butterfly as high as you can go,
I’m right there with you more than you know.

Where I have gone I am not so small.
My soul is as wide as the world is tall.
I have gone to answer The call, the call
Of the one who takes care of us all.
Whenever you look, You will find me there-
In the heart of a rose, In the heart of a prayer.
On butterflies' wings, On wings of my own,
To you, I'm gone
But I'm never alone-
I'm over the moon.

I ... Am.... HOME !!!

To all our wonderful friends who have called and sent e-mails, please forgive us for not responding yet, we are so appreciative of your support and we are trying to dig our way through everything!

Tomorrow will be: One week from when we buried Christopher, and when he would have been 14 months old.

We sleep, we exist. Joe took Nick in for a tune up today and painted our bedroom. Today was the first time I have driven my Jeep in weeks. It had the car seat in it, and we had been avoiding driving the Jeep, I'm not ready to take the car seat out. So I drove the car, and the car seat will stay in.

We went to the cemetery yesterday, as I still do everyday and Joe shouted, "Look, there's Christopher." Sure enough a beautiful butterfly came flying over to us. It sat on the ground and let me talk to it. It would zip around, fly back and I could talk talk to it some more. I liked hanging out with Christopher. I was out at the mall the other day, and saw a butterfly display in a window. One window had a black beautiful butterfly, and the next window had a pink butterfly in it. I stopped and laughed to myself. I could see him in heaven with his little green blanket dragging behind him, running around and chasing all the other little girls. Since he never crawled or walked, I believe he is walking in heaven now.

We went to a Compassionate Friends meeting last night. It is for parents who have lost their children. It was good to talk to other parents, and find out strategies for dealing with people in the world. For example one thing the people from Compassionate Friends told us is people will say stupid stuff and you have to let it roll off your back. I had to run errands today and when I told people about Christopher I got the following comments, "Well, you just have to suck it up", "He's better off anyway", and "Oh well, life goes on, just move on."

I'm pretty numb and everything seems hazy today so I ignored the comments, and am glad I had been to the meeting last night. It prepared me to start dealing with some of the insensitivities of people in the world. I know most people don't know what to say, and no malice is intended, but if you don't know what to say, just say I'm sorry.

I think I spend a large portion of my day trying to figure out where Christopher is. I know he is in heaven, but when you are a parent you worry about where your children are every second of the day. When you are at work, you worry about them at daycare, or call to check in if you have to go on a business trip and can't see them. Because I can't physically see him, or hear his little voice I'm having a hard time finding comfort he is OK and safe. Perhaps because I was at his bedside taking care of him for so long when he was sick, and knew everything that went on with him, I'm having a hard time getting readjusted. I think it is probably I love him with all my heart and miss him. I just want him to be free from pain and happy. I miss him.

Joe and I want to thank with all our heart our wonderful friends. You have not run from us, and are still here holding our hand as you always do. When we can not take care of ourselves you are here with a meal, or a phone call. When we came home from Hopkins, you stocked our fridge, and had flowers all over the house so we didn't have to come home to a cold empty house. You send us gifts in the mail (thank you for the beautiful crystal butterfly "Uncle Brian" and "Aunt Jameela"), and always check on us. Also, to all the people who have been sending cards, friends and strangers, thank you. We are overwhelmed at all the people are little boy touched. It truly blows us away.

And so it came and went. The first holiday without Christopher. We slept, I cried, we visited Christopher. We took Nick (the dog) to visit his little brother. He just sniffed and knocked stuff over. I cried. Yesterday, Father's Day, was a hard day. I bought Joe his favorite ice cream cake, some cards from Christopher and I, and a figurine of a blond boy. Christopher would have wanted it that way. I think one of the things that is so hard to figure out after you loose a child is if you are still really that child's mom or dad. I have been assured by many, yes, you will always be a mom or dad.

I miss Christopher so much, it's just devastating. We only eat when friends bring us food, we just don't want to do anything.

I bought books on grief, I think I'll return them, they don't seem like they will help much. We got the lost rolls of film with Christopher's picture's on them developed this weekend (see picture below). The pictures were all from the end of December/beginning of January. He was smiling and so happy in the pictures. In one picture there is the three of us smiling. I call it the "life was perfect for one second in time picture." There is even a picture of him leaving to go to Hopkins to start chemotherapy. He's tucked in his car seat, little hat pulled over his head and looking sleepy.

The beginning stages of grief are so indescribable. Every hour is up and down with emotions. It's good to have Nick, he forces us to get up and walk every day. We need to take the dog in for a tune up this week (coat, nails, heartworm tests) which will give us something to do. We are trying to figure out how to live in the real world. Not only did we loose Christopher, but we were living in a hospital for 6 months and have to figure out how to live in the house again.

The grandparents have left, the house is quiet. Very weird..... Not only did we loose our baby, but we lived in a hospital for 6 months and have to get readjusted to living again.

We went to see Christopher today. I cried and cried at his grave. I miss him so much. I asked him to please give me a sign to let me know he was OK. We wanted to be there at 4:00pm, the exact time he passed away last Friday. Right before 4:00 one of the butterflies from yesterday came zooming across our path. About 10 minutes later, a beautiful black butterfly came up to Joe and I and started "playing" with us. It flew right to my face than in between the flowers on his grave. It zoomed around us and would wait till we tried to pick it up, than zoom around and back to us again. This went on for about 10 minutes. I think he was telling me he was flying in the sky.

Butterflies just somehow fell in to place and became his symbol to us for the following reasons:

-The name of our street is called Papilion. The word Papilion translates into butterfly.

-We were out running errands, and the signs in the shopping mall all had butterflies on them.

-We have had many people who are mourning Christopher's death with us, e-mail us to tell us about strange butterfly sightings. Butterflies flying in stores and landing on counters in front of them, in front of their car, the stories go on and on. However, the pain is deep and also goes on and on........

His Memorial Service was beautiful. I read his eulogy, a letter I had written him, and we played "You'll be in my Heart" by Phil Collins. There was a small ensemble of the choir that sang and played the flute, and the congregation sang many hymns. My sister read a poem to me. I had given her a list of poems and she picked out her favorite and read a letter written from a little boy in heaven to his mama. We were also honored to have our geneticist from Johns Hopkins come and speak about Christopher and his courageous fight. The highlight of the service was our pastors sermon. They reminded us there are no answers to why, however not to give up on God or our faith because that is where Christopher is.

The church was once again decorated with butterfly and regular balloons. His coffin was baby blue and looked like a bassinet. It sat on top of his snoopy blanket he was wrapped in when he passed away.

When the service was over and the pall bearers took Christopher outside to put in the hearse, their was a police escort waiting to take us to the burial site (I guess because of the large attendance of the crowd). The police stood at "attention" as we left the church, and again as we entered the cemetery. I told Joe you would have thought we were burying a dignitary. Perhaps we were, and we just didn't know it. Their motorcycles reminded me of one of Christopher's favorite blankets he slept on in the hospital that had motorcycles on it. The road to the burial was filled with many butterflies.

We did a graveside burial and than released balloons and butterflies into the sky. This was the second saddest day of my life, I didn't want to leave the casket.

We want to thank all of the wonderful friends and family who came to stand by us. People came from near and far to stand by our side and we are eternally grateful.

Joe and I received people for over three and a half hours tonight. The viewing was originally scheduled from 6-9, and we received friends till after 9:30. Christopher's oncologist, nephrologist, and pediatrician were there. Sorority Sisters I hadn't seen in 7 years, and college friends from Virginia Tech came. Our work friends from past and present jobs, and friends from church attended. His school teachers from Fair Oaks Hospital Day Care Center attended, and we even met strangers who never met Christopher who came to pay their respects.

We received people in the sanctuary and filled it with Christopher's memories. We put up his pictures, toys, fingerpaintings and Elmo's. Flowers overflowed in the sanctuary, and even had to be put out into the Narthex. We figured over 200 people attended and the greeting line was out the door.

We felt so honored for so many people to come and pay their respects. I grabbed people's hands and brought them over to the casket to let them see Christopher. He looked so handsome in his tuxedo and bow tie. He only wore socks, no shoes, he never wore shoes in the hospital. I couldn't stop rubbing his sweet head or holding his hands. I kissed him all night on his beautiful face and can't believe I won't be able to touch him again after tommorow.

We finalized funeral arrangements with the pastor this morning. I think the service will be beautiful and special. Joe and I went to see Christopher at the funeral home today. They had him dressed in his tuxedo, laying in his beautiful casket that looks like a bassinet. The three of us got to be together for a few hours. We held his hands, and stroked his head. I asked God to let this memory live in my heart forever. I can't believe in a few days when the casket closes I will never be able to touch him again.

This is the beginning of a story about a little boy who is about to undergo the fight of his life against Hurler’s Syndrome (Mucopolysaccharidosis I)

I will never change those words, this story will never end, for a person's spirit never dies. The focus of this website may now change and become:

This is the beginning of a story about a family loosing their precious angel after the fight of his life.

After hours of careful searching, we found a beautiful place to lay Christopher to rest today. We searched and searched, I even got sunburned! We decided on a beautiful spot on top of a hill, surrounded by trees and a nice breeze. He will be able to look out over Fairfax, and can even see mama's work in the distance.

Christopher's obituary will be in the Washington Post Tuesday -Thursday and the Richmond Times Dispatch (Richmond, VA) Tuesday -Wednesday.

Wednesday: Viewing at Centreville United Methodist Church 6-9 pm (Centreville, VA)

Thursday: Memorial Service at 1 pm at Centreville United Methodist Church, and graveside burial to follow at National Memorial Park in Falls Church Va. After a graveside service we will have a butterfly and balloon release to send love up to Christopher in heaven.

In lieu of flowers we ask for a contribution to the Christopher Migliozzi Memorial Fund at Centreville United Methodist Church. This money will be earmarked to create something special in the future. Joe and I want to either build a playground for handicapped children, or perhaps do something for the MPS society.

Everly Funeral Home, 10565 Main Street, Fairfax Virginia 22030 (This is the funeral home handling our arrangements)

Follow for about 2 miles. Pass the movie theatre on the right and make a right onto New Braddock Road.

Church is on the left side. Take a left at the stop light onto Centrewood Road. Take your first left onto Old Centreville Road (No sign on road)

We picked out a casket today for Christopher, the saddest experience of my life. Tomorrow we will pick out a plot to bury him in. We are looking for a children's cemetery so he can be surrounded by other angels. We also bought him a tuxedo to bury him in. He was suppose to walk my mom down the aisle in October when my sister got married. We bought him a tuxedo, with a white shirt and black bow tie.

Wednesday: Viewing at Centreville United Methodist Church 6-9 pm (Centreville, VA)

Thursday: Funeral at 1 pm at Centreville United Methodist Church, and burial to follow (location to be announced)

We have to tie up a few loose ends tomorrow, and write his obituary for the paper. His obituary will be posted Tuesday -Thursday in the Washington Post and Richmond Times Dispatch. We will post the final arrangements with dates, times, directions and where to send flowers and memorial donations tomorrow.

Christopher has given me a few signs in the past day. I always sang him a song about a caterpillar becoming a butterfly. Today Joe opened the mail and there were pictures a group of elementary school children from Florida sent. The pictures were all of butterflies. We were talking with one of our friends outside today and looked up in the sky. There were balloons flying high into the sky that disappeared into the clouds. We will be releasing balloons during the burial. Despite this, the sorrow we feel is indescribable. I keep trying to justify in my head why Christopher isn't here but I can't, perhaps in time I can. The loss of a child is the greatest loss, the most severe pain and the biggest question that can ever be answered. I know we will live in pain, every day for the rest of our lives until we can meet again in heaven and kiss his precious face again. I cry every minute, and sleep in his room. (I'm use to sleeping on the floor or chairs in the hospital so a bed feels weird).

We got back to Virginia late last night. The pain is too intense to describe. I miss my little boy and wish he didn't have to die. I am so proud of him, he put up a brave fight and taught me how to live. Preliminary funeral arrangements are being made for the middle of the week. I was begging the doctors until the end to try anything, even a lung transplant, but he was too sick. Joe and I realized after he passed how sick he was. One of his incisions came open and he started bleeding again, and there was blood in his stool.

We came back home after 6 months to his room. The pain and quiet of this house is too much. I don't understand what happened. All the prayers, all the prayer chains, I knew he would make it. I'm struggling in my faith, Christopher was a miracle to us, however I always thought God would grant him the miracle of healing. We never doubted God or got mad, we just accepted and went on. We knew he would lead us down the path of healing and home again.

Here we are, trying to figure out how to plan a funeral for a 13 month old baby.

07/22/09